THE LONG AWAITED THIRD OPINION
Sorry to those of you who have been waiting to hear about Kierra's appointment with the new doctor. I fully intended on writing about it on Saturday, but as it was, we spent most of Saturday pulling flowers and plants out of the flowerbeds, then watched as two cop cars and an ambulance sat two doors down because the teenage son was hopped up on drugs and beating up his mom (he no longer lives there). Then to top off the evening, Karis starts to bark like a seal (YUP YOU GUESSED IT!) and it was an ER run for the steroid to treat croup. Believe it or not, it wasn't Jenna for once - the Croup Queen of Canada. So we fully anticipated taking Jenna last night, which wasn't the case miraciously. KNOCK ON WOOD, KNOCK ON WOOD!!!! Karis is doing much better, but she was pretty cranky yesterday. They got there around midnight, didn't get seen until 2:30 and got home around 3am - so tired. Then Kierra started to scream because Sunday is daddy-daughter breakfast day (daddy makes waffles, bacon, egg wraps... mommy sleeps in), but daddy was sleeping. After 20 minutes of tantruming, poor Jarrett woke up and came downstairs tired. It wasn't a fun Sunday. We spent it sleeping on and off on the couches while the kids watched Miss Spider's Sunny Patch. Finally we went to the park and let the kids ride bikes outside for 2 hours. Holy crap, shouldn't I get back to my initial point?
OK so Saturday, my neighbor was nice enough to watch the other two girls so Jarrett and I could take Kierra to see Dr. K. It's across the City, so we trucked down there, and I ogled the massive houses as my husband told me "No way! Do you know what traffic is like on the South side?" Fine! We get to the office, and right away he comes out and smiles and talks to Kierra. You can tell instantly that Kierra likes him. She's smiling away, shows him her puzzle she brought. Fellow moms, you know how golden it is when your kid LIKES the doctor.
So we sat in the room, and we talked a bit about Kierra's health in the past and presently. He asked us a lot of questions about her diagnosis process, her eating habits, her pooping habits and her behaviors. He marvelled how she put her puzzle together in no time flat (typical Kierra - she has amazing memory and spatial abilities). He kept commenting on how wonderful she was. Then we talked about her current therapies she's undergoing. He was very impressed by the work we've put into her (sorry to make her sound like a car restoration).
After that, he started to talk about his theory about Autism. Basically that it wasn't just a neurological disorder. This is when I infamously whip out the article I clipped out of the newspaper the night before from a Harvard University study done on Autism. It stated they've figured out it's not only a neurological disorder - rather it's a whole body disorder. Their findings have been that people with autism are showing a wide range of problems in their organ systems, primarily the immune system. They aren't sure what is causing it, but it's a recurrent theme. This is where Dr. K came in. He was delighted to see the article and said, "This is why I take this specific approach to Autism". He did confirm that it was DNA based, but that it was exaggerated by environmental factors. He also stated that vaccines didn't CAUSE autism, but suspects that it acts like a catalyst for it. Mainly, if you are predisposed to autism, and you have an unheatlhy immune system, that vaccines aren't being handled properly by the body systems. So rather than boosting the immune system, it is causing the body to attack it's own immunities - which causes adverse reactions that can also cause neurological problems. It is his belief that if you look at the immune system, and what other problems are coming from that, you can start taking care of them and decreasing the symptoms of the autism. Dr. K firmly told us you can never "CURE" autism (which we knew), but compared it to diabetes. You always have it, but sometimes with proper lifestyle changes, you can make a positive impact on your symptoms.
I did tell Dr. K that I had hear about the DAN approach about three years ago, but that my pediatrician didn't recognize it and told me it was a bunch of garbage. He said it's typical and not everyone believes it can work. He stated that unfortunately it doesn't work as well in some children as others. Mostly children who were high functioning had the best results; especially when it was a younger child. He also stated that it is always good to see the whole picture because you just never know. Just alleviating some of Kierra's body problems could help with her concentration and overcoming some of her hurdles. Of course we don't expect miracles - but we are willing to see just what, if any, changes can be made for positive advancement for her.
He immediately asked us about food allergies, and then replied he thought it was very probable she had some because she had "allergy shiners". This is the dark circles under her eyes that we have noticed for years now. He said it's a typical reaction to food allergies. He thought we should have a food allergy panel done. Then he noted her skin coloring, which tends to be on the yellowish-side. He said that could be a good indication that her liver functioning isn't quite what it should be and that she's not producing enough bile, so her billirubin is higher than normal. She's not jaundiced - but this means she's not digesting all her nutrients properly. This would possibly be why her hair doesn't really grown and is brittle. Also why her nails never really grow. Also her poop tells him this is probable because it is so light in color. Her body isn't absorbing like it should. He said this could be because of high levels of yeast in her digestive tract, and the lack of the proper bacteria that add in digestion and absorption. So they will be conducting a stool test to look for the yeast, and other issues related to this.
He also talked to us about how children with autism have higher levels of metal toxicity in their systems. Mainly, lead, mercury and tin. They aren't quite sure why, but a urine dip is accurate enough to tell us if she does have high levels. If she does, there is a more advanced test to have it move through her system more to tell us just how much there is. If so, there are some procedures that can be down with involve taking an oral or IV medication to flush her system of these toxins. But he'd rather do the less invasive tests first. He thought she probably had some mineral and vitamin deficiencies, which we'll check for. And he gave her a more organic children's vitamin to take which doesn't contain dyes.
Of course we discussed foods she eats, and the possible allergies. Gluten and casein - which is wheat and dairy allergies. He thought it was odd how she decided to no longer drink milk. We are going to wait to see what the allergy tests say first. Until then, we are keeping a diet journal and noting her skin colors, poops and behaviors that day. He wants to see how her body reacts to certain foods. He said a lot of the time, people with allergies to foods really crave to eat them, because their body's get this high from the shock it produces to the system. Essentially, this is why we develop cravings to certain foods. He said her cravings for carbs like pastas and breads could be allergy related.
We get some results back in about three weeks. He sends it off to a special lab in Seattle that deals specifically in testing for these types of things. We are feeling optimistic that there is something to be said for all of this. Of course we won't know more until those tests come back. Dr. K did seem very open-minded and willing to look at all the possible angles with us, which was great. And he definitely wasn't pushy or presumptuous with us. He just thought that looking at the whole picture was the best approach - which we are finding is probably true.
So that about wraps it up. If you are still reading - wow, you must really like me LOL. Hopefully you've learnt a lot with me. As I've said, I'm not 100% sold on anything at this point but I don't think it hurts to know all options, and to explore them - especially if they don't hurt anyone. In light of recent scientific findings - I'm hopefully optimistic that there are more answers out there waiting to be discovered!
7 comments:
Sounds like a great doctor. He's open minded and that is so important when dealing with a mysterious disorder like autism which has so many theories.
My daughter has Tourette's. There a theory that strept thoat infections can trigger an autoimmune response in some that causes tics, Tourette's, and OCD. Her neurologist thinks it's crap but her tics did improve after a tonsillectomy. Makes you go, hmmm.
(i deleted my comment because i asked a question that someone else answered for me)
WOW! He sounds like he really cares and really wants to do anything to help you guys.
And he does sound so very hopeful.
I really hope that this route will bring you some working tools to help Kierra. I have a feeling that it will.
Keep us posted on the results and all things moving forward from this point.
Can I say that I'm a little excited about this for you all?
xoxo
This was very informative...Thank you for sharing all of this...
Good luck too!
Glad everything went well with the doctor!! It's definitely a good thing when the kids are comfortable with them too. Sounds like he considers all the possibilites and treats an entire disorder, not just a couple facets of it. Hopefully this gives you some usefool information and tools to help her even further.
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