Since going on the Gluten and Casein Free diet we have started seeing a DAN! Dr. in Omaha and are giving the boys supplements. We also take the boys to Occupational Therapy once a week. We are waiting for an insurance waiver to begin ABA therapy for Lochlan. The boys also get early intervention from our public school. By far the intervention with the biggest results has been diet changes and supplementation.
Last week we went to Omaha to our DAN! Dr. to do a supplement check and discuss Lochlan's steady increase in self-injurous behavior. We discontinued the Intrakid as now that we have added many other supplements it has begun to block some pathways. We also discontinued the vit C supplement as his stool analysis came back full of yeast (vit C can feed yeast). We decided to do a ONE (optimal nutrition evaluation) test from Genova labs for each boy to see what they are lacking and then have a pharmacy compound a multivitamin tailored to each boy's needs. The test was only 95.00 ea and in the long run would save us much money. We also decided it was time for B-12 injections as the boys were making little progress with the foot patches. It is just utterly amazing how such a tiny body and being exposed to the world for such a little time could be so toxic.(the vaccines play a huge role in toxicity) The plan is use the B-12 injections to raise the Glutathione levels and help them excrete the toxins. We also changed over to a Houston Lab enzyme called Trienza (a broad spectrum enzyme) as well as increase the amount of probiotics to get help get rid of yeast. Dr. Leann explained how at the recent DAN! conference it was said that enzymes and probiotics are so important to include even with the gfcf diet. I am also considering giving the specific carbohydrate diet (SCD) a chance as it will help decrease the yeast issue. I love how it feels to go to our DAN! Dr. and feel like we actually have a handle on things. For one day I feel like I know what I am doing and that we have a very specific plan.
The boys' current conditions (3 wks previously off supplements )and 2 days into new regimen including 1 B-12 injection:
Sully is verbally stimming most of the time and is not following directions. He is back acting like he doesn't even hear you. His eye contact is suffering and he is very anxious and mouthy. He is getting overstimulated very easily and the littlest noise or smell will set him off. He obsesses about bugs and it not easily redirected.
Lochlan spends most of his day stimming with our coat closet doors-opening and shutting.... He has very little spontaneous language (5-10 words) and his eye contact is also suffering greatly. He is upset most of the day as he has no way of communication and his first response is to be self injurous. (I do believe that the SI behavior is mostly behavioral and will continue until we can give him some mode of communication.) We did get a soft helmet for him so we can go out in public and still keep him safe. He is head banging and doing other SI (self-injurous) behavior some days more than 50 times per day. We are watching him slowly slip further and further into his own world. We are hoping the new regimen and the B-12 injections will stop this downward spiral and help bring him back to us.
The Methyl B-12 injections are to be given every third day. The first injections we gave to the boys while they were awake and they honestly didn't feel it.(thanks to the numbing creme and extremely short needle) Lochlan's first injection was on Wednesday of this week and yesterday he was a bit more fussy and clingy. Other than that there wasn't any change. Sully's first injection was yesterday and I will see how he responds today. For more info, testimony and great video footage of the results of the Methyl B-12 go to www.drneubrander.com. This helped us in our decision to administer injections.
Friday, May 30, 2008
Thursday, May 29, 2008
How it all began....
When I think back to how this journey all began I can't help but wonder where along the way did everything begin to go so wrong.
Sully's Story:
Sully's Story:
My first pregnancy was pretty typical for the first 6 mo- morning sickness and terrible indigestion. I had preterm labor and was on medication to stop contractions. I didn't know it then but the medication my OB Dr. prescribed was not recommended for pregnancy and there was actually a warning from the FDA against using it for such purposes. The Dr. never disclosed this information to me and I trusted him. I was taking both Procardia and Terbutaline on a daily basis from 32 weeks gestation until delivery. I did get a flu shot that winter as well. Sully was born July of 2004, 10 days early. We were both given antibiotics during delivery and Sully received the typical newborn care at the hospital including a Vit.K injection. He was a very healthy baby and was a terrific nurser from the start. He did become jaundiced a bit after we were at home but it resolved itself with nursing. At 2 weeks we noticed blood in his stool and after many occurrences and many screaming hours with his abdomen hard as a rock we were told he was MSPI (milk soy protein intolerant) and had severe reflux. I would have to go on a very strict diet if I wanted to continue to nurse. Sully was also placed on medication for reflux.(Prevacid) I followed the diet religiously but the blood kept popping up every couple weeks. Sully received all the normal vaccines and after every vaccination he would get very sick with a "viral" rash, then diarrhea (GI virus) and then end up with an ear infection followed by a round of antibiotics. (This cycle repeated itself for the first 18mo of his life and his stools were either explosive runny or none at all.) He would just barely recover in time to get another round of vaccinations. At 6 mo Sully stopped gaining weight and was sick all the time. Our doctor told me I would have to bottle feed so we could keep track of the amount of milk he was taking. Sully shut down. He refused the bottle and after many tries we finally were forced to do Neocate formula in a bottle and try feeding him every 2 hours for 45 min until he finally gave in. He starved himself for 3 days. Finally he would take the formula but never at full strength-he would just projectile vomit. We struggled for 6 mo to get him to be able to keep the formula down. Our doctor never seemed to be worried about this and told us we needed to be more strict with him!
Can you believe that? Finally after his 1st birthday and weighing only 16 1/2 pounds we drove an hour to Omaha and admitted him to the Children's Hospital ER ourselves. He was diagnosed as failure to thrive and went through a battery of tests as well as a scope. That was just the beginning. Once at children's we saw a Pediatric GI Dr (which we had been waiting for months to get in to see) and she wanted to try to have him drink the feeding tube formula in a sippy cup before they put in a feeding tube the next morning. To our surprise he drank it and he loved it! We finally thought we were on to something. From that time he started to put on weight. Once we were back at home he had his 12 mo well child check and he received his MMR as well as a few other vaccines. It was between 12 and 18 months that we really lost our son to autism. He started awkward finger movement, blank staring, his language became only echo and his eye contact disappeared. Sully was always a very independent baby- he didn't want to be cuddled and rarely turned for his name. He never ever pointed at things and had terrible food aversions. By 18 mo he was very obsessive compulsive and didn't want to eat or drink anything but foods with milk. He would terrible meltdowns and would destroy everything in his path. He spent most of his time lining up his cars and falling apart if anyone interrupted him. 
Sully's pediatrician mentioned to me at 18 mo that she thought he should be evaluated for autism. The word hit me like a ton of bricks. How dare she even consider it. He was so smart and meticulous. How could he be autistic? We know he had some issues but to go as far as that? Everything we thought could be explained by his medical issues or experiences. It took me 9 mo, an eval from the local school system and countless hours on the Internet before it finally soaked in. Sully had autism. I immersed myself in books and the Internet. Searching for anything I could do to change this. There was so much information to sift through and so many options for treatment. How could I possibly know what to do? I focused on the medical issues he was experiencing and the more I looked the more I found. The idea that his body was full of toxins and they were affecting his growth and development made sense with what we were seeing for symptoms. I had come across some information on the gluten free casein free diet that had testimonies of promising results. So we decided to give it a shot. One mom even wrote a book how she essentially saved her second son from autism by following the GFCF diet (and other things too.) Once we removed the dairy a new set of problems surfaced with sensory processing disorder. I believe the milk proteins acted like a drug and that is why he was so disconnected and foggy all the time. And the journey to detox his system and find our son continues.
Can you believe that? Finally after his 1st birthday and weighing only 16 1/2 pounds we drove an hour to Omaha and admitted him to the Children's Hospital ER ourselves. He was diagnosed as failure to thrive and went through a battery of tests as well as a scope. That was just the beginning. Once at children's we saw a Pediatric GI Dr (which we had been waiting for months to get in to see) and she wanted to try to have him drink the feeding tube formula in a sippy cup before they put in a feeding tube the next morning. To our surprise he drank it and he loved it! We finally thought we were on to something. From that time he started to put on weight. Once we were back at home he had his 12 mo well child check and he received his MMR as well as a few other vaccines. It was between 12 and 18 months that we really lost our son to autism. He started awkward finger movement, blank staring, his language became only echo and his eye contact disappeared. Sully was always a very independent baby- he didn't want to be cuddled and rarely turned for his name. He never ever pointed at things and had terrible food aversions. By 18 mo he was very obsessive compulsive and didn't want to eat or drink anything but foods with milk. He would terrible meltdowns and would destroy everything in his path. He spent most of his time lining up his cars and falling apart if anyone interrupted him. 
Sully's pediatrician mentioned to me at 18 mo that she thought he should be evaluated for autism. The word hit me like a ton of bricks. How dare she even consider it. He was so smart and meticulous. How could he be autistic? We know he had some issues but to go as far as that? Everything we thought could be explained by his medical issues or experiences. It took me 9 mo, an eval from the local school system and countless hours on the Internet before it finally soaked in. Sully had autism. I immersed myself in books and the Internet. Searching for anything I could do to change this. There was so much information to sift through and so many options for treatment. How could I possibly know what to do? I focused on the medical issues he was experiencing and the more I looked the more I found. The idea that his body was full of toxins and they were affecting his growth and development made sense with what we were seeing for symptoms. I had come across some information on the gluten free casein free diet that had testimonies of promising results. So we decided to give it a shot. One mom even wrote a book how she essentially saved her second son from autism by following the GFCF diet (and other things too.) Once we removed the dairy a new set of problems surfaced with sensory processing disorder. I believe the milk proteins acted like a drug and that is why he was so disconnected and foggy all the time. And the journey to detox his system and find our son continues.Lochlan's Story:
We found out we were expecting our second child just before we took Sully to Omaha to admit him for failing to thrive(Sully was 12 mo old). We were excited to have another baby and had hoped that this baby wouldn't be so sick or fragile like Sully.
My pregnancy was similar-terrible pre-term labor, lots of medication (daily terbutaline and procardia from 28 weeks gestation on), 3 weeks of bed rest and a flu shot. I went in 2 times before we delivered in labor and they were able to stop it with medication. I delivered Lochlan at the beginning of 34 weeks. His heart rate was struggling so he was vacuumed out in the end and was having trouble breathing when he was born. (we were both given antibiotics during delivery as well) He was taken to the nursery immediately and once they had him stable he was given the routine newborn care. Lochlan never passed his meconium and at 48 hrs old the Dr ordered a scope in which it passed then. There was no concern as to why it didn't pass on its own, they only cared that it had passed. Lochlan was constipated from the time he was born. He wasn't an easy nurser- it took quite a bit of work. Knowing he could be MSPI and have reflux as well I went on the diet right away. At 1 week of age he was placed on reflux medication and it never seemed to do enough. He spent the first 3 mo in an infant swing at night. Lochlan was a very sickly baby as well many ear infections and unknown GI viruses. He followed the same cycle as Sully-becoming ill (rash, diarrhea, ear infection and antibiotics) after every well baby check (vaccines). He was placed on formula at 2 mo of age due to chronic constipation and reflux. Unlike Sully he gained good weight and did not have the failure to thrive (thank the Lord!) We kept on his medication for reflux thinking that it was the cause of Sully's food aversions. 
We were certain to do things right this time and follow our gut-rather than our Dr. We thought we were on top of the reflux, feeding and illnesses. It wasn't until after Lochlan turned one that he really changed. I believe it was the combo of vaccines (MMR...) and the start of Vit. D milk. At 12 mo. he was babbling, almost walking, engaging, laughing, smiling we were sure we had beat it. It was somewhere between 12-14 mo he stopped babbling and by 18 mo his eye contact was almost gone. He would no longer answer to his name and he didn't point or wave. It wasn't until we had moved to Iowa and we met with our new pediatrician for his 18mo well child check that I realized we had missed the signs.
We were so consumed with Sully and his diagnosis and getting him therapy that we didn't see it coming.We had even put Lochlan on the GFCF diet with Sully as a precaution when Lochlan was 14mo. We had Lochlan evaluated by the public school and at 18mo and he was severely delayed. His official autism diagnosis came just after his 2nd birthday. How could we have let this happen!! We have not had any intervention make a huge impact on his recovery (like Sully had with the GFCF diet) and we are constantly searching to find a way to help him "out".
We found out we were expecting our second child just before we took Sully to Omaha to admit him for failing to thrive(Sully was 12 mo old). We were excited to have another baby and had hoped that this baby wouldn't be so sick or fragile like Sully.
My pregnancy was similar-terrible pre-term labor, lots of medication (daily terbutaline and procardia from 28 weeks gestation on), 3 weeks of bed rest and a flu shot. I went in 2 times before we delivered in labor and they were able to stop it with medication. I delivered Lochlan at the beginning of 34 weeks. His heart rate was struggling so he was vacuumed out in the end and was having trouble breathing when he was born. (we were both given antibiotics during delivery as well) He was taken to the nursery immediately and once they had him stable he was given the routine newborn care. Lochlan never passed his meconium and at 48 hrs old the Dr ordered a scope in which it passed then. There was no concern as to why it didn't pass on its own, they only cared that it had passed. Lochlan was constipated from the time he was born. He wasn't an easy nurser- it took quite a bit of work. Knowing he could be MSPI and have reflux as well I went on the diet right away. At 1 week of age he was placed on reflux medication and it never seemed to do enough. He spent the first 3 mo in an infant swing at night. Lochlan was a very sickly baby as well many ear infections and unknown GI viruses. He followed the same cycle as Sully-becoming ill (rash, diarrhea, ear infection and antibiotics) after every well baby check (vaccines). He was placed on formula at 2 mo of age due to chronic constipation and reflux. Unlike Sully he gained good weight and did not have the failure to thrive (thank the Lord!) We kept on his medication for reflux thinking that it was the cause of Sully's food aversions. 
We were certain to do things right this time and follow our gut-rather than our Dr. We thought we were on top of the reflux, feeding and illnesses. It wasn't until after Lochlan turned one that he really changed. I believe it was the combo of vaccines (MMR...) and the start of Vit. D milk. At 12 mo. he was babbling, almost walking, engaging, laughing, smiling we were sure we had beat it. It was somewhere between 12-14 mo he stopped babbling and by 18 mo his eye contact was almost gone. He would no longer answer to his name and he didn't point or wave. It wasn't until we had moved to Iowa and we met with our new pediatrician for his 18mo well child check that I realized we had missed the signs.
We were so consumed with Sully and his diagnosis and getting him therapy that we didn't see it coming.We had even put Lochlan on the GFCF diet with Sully as a precaution when Lochlan was 14mo. We had Lochlan evaluated by the public school and at 18mo and he was severely delayed. His official autism diagnosis came just after his 2nd birthday. How could we have let this happen!! We have not had any intervention make a huge impact on his recovery (like Sully had with the GFCF diet) and we are constantly searching to find a way to help him "out". And so a new chapter in our lives begins.
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