Monday, August 12, 2013

Working to heal Bear

As I mentioned in my last post, Bear has been diagnosed with ADHD. It has been a roller coaster ride to say the least.

We had him on Adderall xr for about a month and a half. He did better in school, but I hated how he seemed to lose his personality when he was on it. When I took him to his million appointments, including behavioral therapy, once every two weeks, appointments with his pediatrician, appointments with pediatric development, appointments at his school, he would just sit there. Gone was his happy and curious personality. I would ask him a question and he would respond with a few words and then just sit there again. I hated it. His behavioral therapist suggested that a non-stimulant would be a better match for Bear, but Adderall xr is a capsule, that can be opened, and mixed with apple sauce, and that is the only way I could get Bear to take it. He has not mastered swallowing pills whole yet and the non-stimulant, the pediatric development doctor offered us to try, could not be opened.

When he got home from school, the Adderall xr would be wearing off, and he would be lethargic. Also, he didn't eat lunch. At the end of the school year, I was sending half of a sandwich and one bite would be missing when it came home. He went from eating a cup of yogurt, an entire sandwich, a bottle of milk, some of his fruit, and a cookie, to literally taking one bite of his sandwich. Everything else, including the cookie, came back home.

He also started having trouble sleeping at night. Adderall is a stimulant after all and well, it kept him up. So, the doctor said we could give him melatonin to help him sleep. She also put him on an allergy medicine that is sometimes used to increase appetite. Then he started waking up crying with dry mouth.

I was not happy with the Adderall and the other drugs, but it did help at school, so what could I do?

Luckily, I have a friend who sent me some links, one of which was for a book called, Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies, by Doctor Kenneth Bock. I am so grateful to this friend. She will never know how much she changed our lives. Especially Bear's.

One of the most important changes to make for these kids, according to Dr. Bock, is to put them on a casein (an ingredient found in dairy) and gluten free diet. This helps about 60 percent of them. I figured, why not give it a try? What do I have to lose? Maybe, Adderall? I sure hope so.

The day after school got out, we started Bear on a dairy free diet. Within a day and a half, we saw changes for the better. We were not surprised, because Dr. Bock said the changes, when you quit dairy, often occur rather quickly, within 24-48 hours. Bear stopped zoning out after he ate. Gone were his trips to La La Land, we had become so accustom to. In the past, when I asked Bear to go get his shoes, he would not respond. In fact, I would have to remind him over, and over, and over. Sometimes, he would actually go get his shoes, but then not know what to do with them. Just getting his shoes on in the morning, before school, was difficult for Bear. A day and a half after Bear quit dairy, I said to Bear, "You need to get your shoes on". I walked into the living room a few minutes later and said, "Go get your" and stopped as I realized, he had gone upstairs, put a pair of socks on, and then came back down, and had both shoes on. I was completely shocked. This had never happened before. He started saying, please and thank you. He held my hand. He gave me a hug when I put him to bed. He got along better with his cousins. He has less outbursts. He hasn't had a single night terror. He can help put toys away now, without standing in the middle of the mess, not knowing what to do. He stopped being constipated. He says, he feels better. All things for the better. All things new for Bear.

Three weeks after putting Bear on a dairy free diet, we put him on a gluten free diet too. According to Dr. Bock, it can take much longer to see the changes after stopping gluten. It can take three months for gluten to fully leave your system and the changes can be subtle.

Bear has been gluten free for almost a month. He says he feels better. Even better than he did, when he was just dairy free. The biggest change, we have seen in Bear, now that he is gluten free, is he has now gone almost an entire week without wetting the bed. Up until now, he wet the bed every single night. He in fact has only woken up dry twice in his entire 6+ years of life and that includes naps, until now. The changes have been really subtle, but I do think they are occurring.

I am telling Bear's story, because so often parents are told that the only things you can do for kids with ADHD, is put them on drugs, and behavioral therapy. Those were the options I was given. When I read Dr. Bock's book and asked Bear's pediatrician about having him tested for food allergies, she told me there was no sense poking and prodding my child. When my husband asked her about it at Bear's next appointment, and told her we were planning on putting him on a dairy free diet, she told my husband, not to get his hopes up, because Bear doesn't have the symptoms of allergies. I don't know if he does or not. I know he has always had trouble with constipation. Maybe he isn't waking up screaming from pain. Maybe his intestines are not bleeding. Maybe he does not have eczema, but obviously he has issues with dairy and gluten, we did not know about. Kids with ADHD and Autism are often sensitive to foods, rather than allergic, and this does not show up on a regular food allergy test. If they are tested, they need to be tested for IgG antibodies too. A regular test is looking for IgE antibodies. The most common sensitivities are casein, gluten, and soy. Corn is also another that can give them trouble. Even if you have a test for the IgG antibodies, you can get false positives though, because these kids often have leaky guts, and things that wouldn't normally show, if their guts weren't leaky, show up as a sensitivity. I read this information in The Kid-Friendly ADHD & Autism Cookbook, by Pamela J. Compart, MD and Dana Laake, RDH, MS, LDN. This book has great information, as well as recipes.

So, what is a parent supposed to do? Well, you can do what I am doing and just cut those things out and see what happens.

There is also something called the Feingold Diet. Back in the 1960s, Dr. Feingold found that kids are sometimes sensitive to salicylates. Salicylate occur naturally in fruits and vegetables (higher in fruits). They occur unnaturally in food flavorings, food dyes, preservatives, aspirin, and other over-the-counter drugs. I suspect, Bear is also sensitive to these. I have cut back on these foods, but I fear, based on his behavior after eating things like jelly toast, apple sauce, and strawberries, I am going to have to eventually cut out all salicylates too. He is on an all natural diet, so the only things left to cut are his beloved strawberries, apples, citrus, fruit juices, and jelly. You can find out more about the Feingold diet here, I have not purchased the program, so I cannot tell you if it works or not. I just cut back on some of the foods, that were listed as trouble foods, and have noticed Bear gets hyper when I let him have them. My friend said that she knows a mom who swears by the program though.

Right now, we are choosing not to put Bear back on Adderall when school starts. Instead, we sought out a MAPS (Medical Academy of Pediatric Special Needs) doctor, formally called DAN (Defeat Autism Now) doctor. You need to be careful when using an alternative medicine doctor, as our own doctor said, some of these guys are quacks, but we are confidant that the doctor we found is a good one. He is retired from the Army. He is a MD, and everything I have found out about him, via google, has been good. Also, our pediatrician has asked us to keep them in the loop and we plan to do so.

So, where are we at now? We are waiting for all of Bear's blood work to come back, and we meet with our MAPS doctor on August 29 to try to figure out how to help Bear.

Keep us in your prayers, that we can heal Bear. I am not anti-medicine at all, just so you know. I just want to try everything else, before he goes back on them. I am pro-anything that will help my child be successful, and I was honestly surprised that the casein and gluten free diet actually worked. I truly believed that we would be putting Bear back on Adderall xr in the fall, but for now, that is not going to happen. We are going to keep Bear on the casein and gluten free diet, keep seeing our MAPS doctor, and see how that turns out. I will let you know. Lord knows someone out there has an ADHD child and is looking for a direction to go. Well, here is another route, other than, or along with, medication, and behavioral therapy, that just might work for your child.

Saturday, February 2, 2013

A memory from when I was pregnant with set number two

I found this note on my Facebook page, so I copied it here. It was before I had a blog. It was experiences like this that inspired me to get a blog in the first place. The memory made me smile. It feels like this happened forever ago and since my babies are almost two, it kind of was forever ago.

So, my son for some reason takes a really LONG time in the bathroom. Not actually going to the bathroom, but messing with the tp, or the rug, or doing who knows what for long periods of time. It is starting to drive both me and Hubby crazy. Seriously, go to the bathroom, ask to be wiped if needed, pull up your underwear and pants, and wash your hands, and get out of the dang bathroom. Today for example, he goes poop (Did I mention I was going to talk about poop?) and I ask him, "Do you need help?" He says "Yes", so I head to the bathroom to wipe him, while he decides to get off of the toilet, and sit on my new bathroom rug, and he ends up getting poop on my new bathroom rug, because like I mentioned, he needed help wiping. Anyway, for the hundredth time I tell him not to sit on my rug with a poopy bottom (I tell him this pretty much every day, yet it has not sunk in) and show him where the dirty spot he left is. Approximately 2 seconds later, he puts his hand in the dirty spot, so I quickly wipe his bottom and move him to the sink, where he pulls up his sleeves (usually helpful unless you have POOP on your hands), so I take his shirt off and then we wash his hands. Then I send him upstairs to get a new shirt and new underwear, because I notice those were a little dirty for some reason, and he screams from his room at the top of his lungs, "MOMMMMMMMMY! MOMMY!", because he is scared to go anywhere in this house where he can't see another member of the family. So I waddle upstairs and I find him some new clothes and think the whole entire time he is getting his clothes on, "Why am I having 2 more kids?" Seriously, why?

I was so frustrated that day. I remember thinking, "How am I going to do this all again?" and wondering why God decided to give us twins again. Three years later, I am still wondering how I am going to do all of this again.

Bubba is starting to be interested in the potty. He tells us when he has to go "poo poo". He has actually done it successfully once, maybe twice. The second attempt resulted in poo all over the potty seat and him (including his feet) and we are not sure if the poop was from him starting to go before he was put on the potty, or if he indeed went more while on the toilet. Right now, he tells us he has to go, so we put him on the potty and then he sees the toilet paper and gets distracted. He gets some tp and wipes, drops it in the toilet, and repeats about 5 times while I tell him, "We go potty first, then we use toilet paper". I scramble to take the tp out of his reach (he is fast and usually grabs a couple more handful of tp, before I can get it off the wall and out of his reach) and he cries because I took the tp away and then I give up, because all he wants is the tp and he has forgotten the reason we put him on the potty was so he could go poo poo, so I put his diaper back on and he ends up using that instead.

Belly also wants to go potty when Bubba goes, so she takes off all of her clothes and sits on the potty for a second and then gets up and runs around the house naked. Then she comes back and sits on the potty for a second (Bubba sits on a potty seat on the big toilet. Belly stills on a little portable potty, so they can go at the same time) and then gets up and runs around naked. All the while I am trying to keep Bubba from wasting all of the toilet paper and keeping him from sticking his hand in the toilet water. I can't even explain how stressed out I feel while all of this is occurring.

Potty training Monkey Girl was easy. She was almost three. She was beyond ready. We took her diaper off and put underwear on her and that was it. We didn't need to do anything. Bear was much harder. He hates change. He was happy going in his diaper. It was hell training him, because he held his BMs and turned into a miserable, crabby kid. He was awful, so in a way, I am happy Bubba is interested at such a young age, but he isn't even two, yet. We could be at this for awhile. I don't really want to be at this for awhile. Maybe Belly will be easy like Monkey Girl, but really none of my other kids are like Monkey Girl. She was not like normal children. She was by far the easiest in every way. The new ones are more like Bear, who is a typical pain in the butt kid! I truly think God gave me Monkey Girl first so Belly and Bubba would have a chance at life!

Thursday, January 31, 2013

Banning play dates

I am thinking about banning play dates. I know that is a crazy idea, but hear me out, okay?

My daughter has been asking if her best friend, Nelly, could come over after school almost daily for weeks. Monkey Girl of course waits until they have just gotten off of the bus and Nelly is anxiously looking at me with her pleading eyes to come over and I usually say, "no", because the babies have about an hour of happy time, after the big kids get home, and then we get the witching hour. They cry. They fight. They want to be held. Belly sticks her little arm in the, supposedly baby proofed, snack cupboard and pulls out anything she can reach and then throws a fit when I tell her dinner is almost done, so she can't have any snacks. Anyway, it is stressful and I don't need another kid in the house.

But yesterday Monkey Girl and Nelly's pleading got to me and I finally let her come over. Another little girl, from school, saw the girls heading into the house and wanted to come in too. Monkey Girl was yelling, "But I didn't invite her!" repeatedly. Ahh! So I told the other little girl, she was welcome to come in too, because the last thing I wanted to do was hurt a little girl's feelings and make her cry, which has actually happened before when Nelly invited Monkey Girl over. Anyway, I should not have let Rayna in the door.

She is adorable. She is really sweet, but while I was trying to make dinner, I heard Monkey Girl yell, "Mom! Rayna asked Bear to show her his bottom and he did!" What? No, no, no! This is not what a mother ever wants to hear, and the last thing I want to explain to another parent. Sure enough, I rushed from the kitchen to the living room just in time to see Bear pulling up his underwear and the back of his jeans. His excuse? "My friend, Rayna asked to see my bottom, so I showed it to her." So, I told him, for the hundredth time, "Your bottom is a private part and you never show anyone your private parts, except your mommy, your daddy, and the doctor when they are examining you." Monkey Girl chimed in with an, "and your sister!" "Okay, fine, and your sister."

So, I thought this would be the end of private parts showing, but oh no! Then Rayna wanted to play babies and she of course was the mommy and she wanted the girls to pull down their pants so she could change their diapers. Luckily, I put a stop to that before it happened. I have no doubt Monkey Girl and Nelly, would have went along with it. They were both about to do it. Did they not just hear my conversation with Bear, that you don't ever show anyone your private parts?!!

Anyway, then Bubba wanted to go potty and when he goes potty, he needs to be totally naked, even his socks must be removed. Who had to be in the room? Rayna. She told the other kids, "Ha! Ha! He is naked!" and wanted them to come watch too. She also had to be right there when I changed Belly's diaper. She followed me upstairs to make sure she got to watch. Then she walked in on Bear going potty upstairs. Then she walked in on Monkey Girl going potty, at the same time, downstairs, at which Monkey Girl, promptly screamed, "You never walk in on someone else when they are going to the bathroom!". I figured Rayna must just have to go to the bathroom too, so I let her know, Bear was finished and she could go use the bathroom upstairs if she had to go potty. She didn't go, so I guess she just wanted to watch my kids go. The other kids didn't appear to have any desire to see anyone naked. Nelly has two brothers and one of them is three years old. You know that kid is probably naked all the time, so Nelly has seen it all already. Plus, the other boy is a baby who is breastfed. Breastfed babies poop constantly, so if she hasn't seen the three year old boy naked, she has surely witnessed a baby boy repeatedly getting his diaper changed.

Rayna has a baby sister. Apparently, her need to see others naked has not been satisfied, so the next time I feel bad and the urge to let her in, so I don't make her cry, I think I will just suck it up and say, "No". I am way too busy to make sure everyone keeps their clothes on while she is here.