Sunday, September 1, 2013

Medical Update on the Kids

It seems like it is time to update here about the kids medical issues. If for no other reason, then so it all can stop swishing around in my head. There is lots of new information right now and I need to start compartmentalizing it.

*All of the pictures in this post are from blueberry picking recently. After blueberry picking, the kids enjoyed a very cold splash in a mountain stream.

Tim 23 ~ Tim has been an irritable person most of his life. However, in the past few years he has struggled more and more with irritability and frustrations over daily activities. Every little speed bump of life is like hitting a mountainside to him. We decided to leave conventional medicine (that was giving us almost no help) and look into alternative medicines. We had him tested for cortisone levels and tests to see how his adrenals were doing. The test results are back and indeed his cortisone levels are very high and his adrenals are not doing well at all. Testing of his neurotransmitters revealed that two of them are very low. These are serotonin and GABA, which help with happiness and a feeling of well being. The doctor started him on some new supplements, but she told us upfront that it might not be enough, since his brain is so badly injured. So far, he is complaining of having lots of trouble waking up in the morning. However, he has been functioning better and having more small pleasant moments than before. We are hopeful that this new protocol will help him over the coming month. We are also trying to stimulate more alpha waves in his brain and decrease the amount of his beta brainwaves. One way to accomplish this is by using classical music. We are playing lots of Bach around here right now. So far, I am seeing a little bit of improvement in mood while the music is on, but as soon as the music stops, he is right back to not feeling well. We plan to purchase Wild Divine soon. Our psychologist has been suggesting it for years. Now we are going to take the leap. It should be useful to multiple people in our home.

We are also exploring changing Tim's diet a bit. He has a latex allergy and we found out that there are several foods that cross-react with latex due to having the same or similar latex proteins. One such food is bananas. He has been allergic to them for years. Now that I see the list of what other foods he might react to, I am realizing that he already avoids some of them because they make him feel bad. It seems like this could be contributing to his mood as well.

Furthermore, we needed to get him a psychological evaluation to keep him at the brain injury program he is now attending four days a week. The results are not back yet, but the psychologist wanted to tell us about his IQ. The verbal part of an IQ is very noticeable when people interact to people because it includes vocabulary, sentence structure, comprehension and carrying on a conversation. Tim has a very high verbal IQ in the superior range. However, the rest of the scores that make up his IQ are in the low average or even below. With such a high verbal intelligence, Tim is able to speak with complex vocabulary and comprehend what others are saying even in a complicated conversation. This explains why there are people (such as the teacher he was having trouble with recently) who think there is nothing wrong with him and accuse him of not applying himself. It takes longer to realize out that he processes information slowly, has a terrible working memory, and has very poor math skills. All of this combines to make it difficult for him to navigate his world, to manage time or even remember his phone number. So when the experts average out his IQ it really cannot reflect Tim's abilities at all. In fact, the doctor said that Tim falls into a very narrow category where the IQ test is useless. In some ways, this is a relief to know. However, it reinforces why he is so frustrated and overwhelmed with life.  Lots of work to still do here with my oldest. I am hopeful that we are on the right path now.

Goldilocks (12) ~ Where to begin...Goldilocks continues to struggle with behavior. She is always creating chaos but complains to anyone that will listen about how her family isn't calm enough and that she hates chaos. When she is in respite care, however, our home is amazingly quiet and calm. Some of the experts think she is exhibiting RAD behaviors (which she has a diagnosis of) and others think her PTSD is being triggered by having to live with her birth brother Tom Sawyer (children who were abused in their birth home and then adopted together often have lots of sibling adoption issues). An additional possibility is that she is showing signs of borderline personality disorder, which her psychologist thinks might be true. Her birth mother has this diagnosis. People with borderline are easily bored and crave chaos/excitement and will create it if it is not present. No matter what is causing her issues, it is very hard to live with at times. We are having a terrible time finding a therapist who we can afford and is also the right fit. Mental health services in the state of North Carolina are very poor. The special needs family support network in our area has given me some places to contact to try to find some funding. I have found some horseback riding psychotherapy in the area which I think would be a good fit, but it is $100 an hour. When you are talking about $100 an hour, funding quickly becomes a major issue. She is still receiving neurofeedback, which is supposed to be calming and improve her processing. However, the doctor doing neurofeedback says it will take YEARS to see improvement. I am not sure I will continue this if I find a good therapist that our insurance takes. We will only be covered for one or the other.
This is a very typical pose of Goldilocks.
I am at a loss as to why she curls her hands this way.
Has anyone ever seen this or know why?
We are waiting for our insurance to catch up with the recent change in pediatricians. Once that goes through, Goldilocks will be having an echocardiogram to begin figuring out if she has Marfan Syndrome. This diagnosis will help us know whether or not the dizzy spells are something to be concerned about.

On a very light note ~ She is ready to start round two of braces and will also need the penguin to help expand her jaw line.

Tom Sawyer (11) ~ Tom Sawyer seems to be making a vast improvement in tolerating foods that he hasn't been able to eat in several years. Lately, he seems to be able to eat organic, unbromated wheat flour if he is given GlutenEase (made by Enzymedica) a supplement. He still reacts to barley. Many of the wheat flours in the store include barley with them, so he can't eat wheat products prepared by stores or restaurants. He does experience stomachaches if he eats wheat without GlutenEase, so we still may need to look into Celiac Disease. His doctor who follows his allergies suggested that he should be tested but didn't want him to go back on gluten to find out. However, I think it would be worth knowing if the tests are not too dangerous or invasive. He does not want to remain gluten/grain free for life if his digestive system could be cured. He continues to take l-glutamine, vitamin C, PB8 probiotics and digestive enzyme supplements to promote digestive health. To our relief, he seems to be handling all food better with less hives, redness, skin issues and behavior issues. He still looks very pale most of the time and complains about exhaustion. I am interested to see what our new pediatrician thinks about his food issues. He seems to be filled with fresh views on what might be going on with the kids.

The dentist is sending Tom Sawyer for an orthodontist evaluation. We knew this was coming for a long time. His teeth are crowded and his chin is starting to recede (just like his biological sister). He has always had very thin and deformed enamel on his teeth which increases the chance of infection and complications. He has already had dental surgery for a growth in his mouth a few years ago. We are concerned about how to keep him healthy through this process. Fortunately, our orthodontist has done a great job with Goldilocks and says he has lots of ways to help Tom Sawyer with his sensory issues.

Tom Sawyer, who has mild cerebral palsy, is nearly finished with physical therapy at this time. While he needs more, our insurance will only cover 16 sessions a year. Consequently, the physical therapist is giving him a list of exercises to do at home so that he can keep making progress (that is, if I can make him do them often enough). He finds physical therapy very painful and it brings him to tears. Still, Tom Sawyer has made amazing progress and can do many things that he could not do at the beginning of this Summer. He can sustain his energy level better and keep up with other children for longer periods of time. I am hoping that the special needs gymnastic class he recently started will help him keep working on his trunk and legs.

We will be looking into an occupational therapy evaluation once PT ends in a couple months. Writing is such a struggle for him. His hands tremor and his whole body tenses with the process. The physical therapist said he is having trouble because his core is so weak and recommended that an occupational therapist could help with fine motor as well as some gross motor. In this way, he can continue getting help for his core while working on the smaller muscles in his hands as well.

Little Red Riding Hood (9) ~ There is really nothing to tell here. She is by far the healthiest and easiest child I have. She struggles a bit with balance when dancing (more than she should after so many years of dance). This is probably because she inherited a mild case of pigeon-toed walking, which would be of little concern if she wasn't interested in dance. We are in a holding pattern to see if the dance studio thinks she should return for a few more sessions of PT. She starts dance classes again next week, so we will see then what the teachers think of her progress over the summer. She has done lots of yoga, standing on her toes, and other balance work to improve her balance.

Well, there is an update.

Blessings, Dawn


  1. Sounds like you are doing a wonderful job. I understand the chaos. Don't know life without it with my adopted daughter.

    Try looking for horse therapy-which isn't just for kids as they do adults also. Insurance doesn't cover it but many offer scholarships and other organizations help-for us Children's Miracle Network.

    Actually horse therapy will work more specific with his issues rather than regular horse therapy. It has made a huge difference in my daughters life. I don't know where you are at in North Carolina(my home state also) but I would suspect they have several options.

    Blessings, Renee

  2. It sounds like you've really had some major changes lately. Thank you for sharing. I will continue to pray for you and your family. You are a wonderful amazing family!!

  3. I had pigeon toes. I was given special shoes to wear to bed to correct it. I will be praying about all the health concerns!

  4. Wow, I knew you were dealing with medical issues here and there with the kids, but I had no idea how many things you were dealing with at once. No wonder you wanted to get it all out of your head. You seem to be right-on with how you are handling each of them. BTW- I take Gabapentin for my neurological issues...perhaps this would help Tim, as straight Gaba didn't help me. You might want to look into it, although you do need a prescription for it.

  5. You are doing such an AMAZING job. These children are so blessed to be a part of your family as, I am sure, you are blessed to have them. I will pray for each one and for strength and resilience for both you and your husband.
    I don't know if this would be of any help but when T11 was having difficulties with his writing (physical difficulties with pain and strength issues) he was told that a trampoline was the absolute best thing he could use. I was astonished. I mean one doesn't bounce using ones fingers! But it was all about the core strength. I'm not sure if that is an option, but it might be an inexpensive yet fun thing to try?

  6. Thank you for sharing this with us, Dawn! I feel like I know your children, and I like hearing about how they're doing and what is and is not working. I can so relate to trying to figure out solutions to a multitude of issues, and I feel less alone in that when I read your blog. I hope that's a good thing! My prayer is that we'd both find solutions for all of our children, but until then, I just like that we have that in common.

    Praying for you as you continue to research, and not only find solutions but find the funds for the solutions! I'm not familiar with Wild Divine; I'll have to look into that a little more.


    P.S. I've never seen anyone curl their hands like Goldilocks does. I'd love to hear if you find out any more on that.