This video is from a year ago, but shows how well Hayden is doing with language skills.
Sunday, December 29, 2013
Wednesday, December 18, 2013
Monday, December 16, 2013
Friday, December 13, 2013
Thursday, December 12, 2013
I am excited to tell you that I have a new position as the Parent Laison for Cornerstone Autism Center! I have been here for over a month now and I absolutely love my job! More information to come, but for now, here is a link to their page:
Come take a tour and say hello! It's a great place for kids!
: ) Sheila
Come take a tour and say hello! It's a great place for kids!
: ) Sheila
PS (Any opinions stated in this blog do not represent the opinions of Cornerstone Autism Center. Just little ol' me.) : )
Here is an update for you on what the Rylie Bug will eat. (Click the links to see the full lists.)
Rylie, in her pull-up and shoes, showing off her tree decorating skills.
More on SCD:
"What Do Your Kids Eat?" which explains Hayden's diet as well.
"Breaking the Vicious Cycle" is the book that explains the diet.
Also... Blog Posts regarding why Rylie needs this diet:
Monday, December 9, 2013
An Organic Acid Test (OAT) allows you to know what is going on with yeast and bacterial overgrowth in the body, along with other nutritional markers.
If you click the link above and scroll to page 7, you can read the explanation of her results. In summary, her OAT showed:
- high fungal/ yeast markers indicating yeast or fungus overgrowth
- high 4-hydroxybenzoic acid, which may be due to bacterial overgrowth of the GI tract, intake of fruits such as blueberries rich in polyphenols (anthocyanins, flavonols, and hydroxycinnamates), or may be from paraben additive exposure.
- High succinic acid, which may indicate a relative deficiency of riboflavin and/or coenzyme Q10, or of general gut dysbiosis.
- High HPHPA, associated with behavioral, GI, and/or neuropsychiatric effects. GI symptoms may include diarrhea or constipation. HPHPA is an abnormal phenylalanine metabolite produced by Clostridia
- High oxalates
- Vanylmandelic acid (VMA) below mean
- 5-hydroxyindoleacetic acid (5-HIAA) levels below the mean, which may indicate lower production of the neurotransmitter serotonin.
- High quinolinic acid / 5-HIAA ratio, indicates an imbalance of these organic acids and may be a sign of neural excitotoxicity.
- High ethylmalonic and suberic acids, which may be due to fatty acid oxidation disorders or carnitine deficiency
- High methylmalonic acid, seen in vitamin B12 deficiency or in defective absorption or transport of vitamin B12
- Pyridoxic acid (B6) levels below the mean, which may be associated with less than optimum health conditions (low intake, malabsorption, or dysbiosis).
- High glutaric acid, can result from glutaric acidemias, fatty acid oxidation defects, riboflavin deficiency, ingestion of medium-chain triglycerides, metabolic effects of valproic acid (Depakene), and celiac disease.
The OAT was a simple urine test Rylie did at home and I then mailed in the special packaging it came with to freeze and protect it. Although it did take several tries for Rylie to have enough urine in the cup. :) The cost was around $300. The test kit was ordered through my Registered Dietitian. Insurance did not cover the cost of the test. The test was processed through Great Plains Lab.
Tuesday, December 3, 2013
Here are notes on the kids' recent DAN Dr. (Autism) appointments and some other evaluations and test notes. Changes made as a result of these are reflected in their new supplement sheet. Click here to view.
I'm sure there are a thousand more things I've forgotten, but I'm also pretty sure that you won't mind. Like I said, it's a journey. This is just one part of the map.
Dr Hulseman Appointment Notes
- mitochondrial metabolism disorder
- noninfectious gastroenteritis and colitis
- abnormal weight gain
1. Start Super Nu for a multi-vitamin
2. Start B12 shots. Use every 3 days. You can increase it up to every day if it helps her. There is a video online you can watch for how to give them. Inject subcutaneously into buttock every 3 days at 30 degree angle or less. If hyperactive, back off to one a week. If improving but wearing off, can do every other day. She has a B12 deficiency. B/c responded well to carnitine, should respond well to b12.
(hyperbaric could help her, but wait for now b/c can be bad for yeast)
3. Increase magnesium for sound sensitivity.
4. Use diflucan for 2 wks, then start nystatin.
Based on her OAT which shows yeast and clostridia (bacteria) still there, she should not be getting any carbs or sugar at this time. No cheating or exceptions until they are gone. See if snoring improves once yeast improves.
5. Add K and other input for oxalates (which will help urination hesitation). K also helps with leaky gut.
Typical approach to managing high oxalates: (oxylates evidenced by urination hesitancy) 1. Treat yeast aggressively with antifungals, probiotics, and diet low in sugar and carbs. Increase probiotics slowly. 2. Add vitamin K2: Start with one drop a day and increase by one drop every 2 to 3 days to avoid diarrhea. 3. Optimize A and D intake. Start with cod liver oil, then adjust dose based on blood tests. 4. Add baking soda using 8 cups in a bath daily (or as much as possible) and soak for 20 minutes.
6. Consider Enhansa after the above, in a month or more. Enhansa is good for gut inflammation.
7. Check labs today.
8. Try the vitamin A protocol. Repeat in 6 months if helps.
- Skip igg for now
- glutathione is low
- Parasite cleanse: alinia and natural supps
- She might like Kirkman pear bars.
Lab Test Result Notes
- zinc is low; do 20 mg twice a day
- D and iron are better. no other changes for now.
Organic Acid Test (OAT) Notes (from forum):
Yeast is bad with Arabinose and Tartaric may be rising which means it is growing. Nystatin can be used continually and it does not interfere with the rest of your Program. Though I agree it is nice to be able to use natural, and natural does not necessarily mean less effective, sometimes giving the body a boost up against yeast with a few rounds of Nystatin can help. Especially since to fight the Clostridia I like NAC but since it is sulfur based I don't like to add it until some yeast fighters are on board and it is more under control.
Are you using Thorne Research Vitamin K2 and VSL#3 yet?? That as we have mentioned can help clear the excessive oxalic acid and can help prevent kidney stones from forming from it. This is happening in our kids far more than you would think.
B6 marker is really low. Low B6 has the liver make more Oxalic Acid. We don't want that. You need to get B6 up if you can. For instance the Super Nu Thera Powder and Caplets have 200mg of B6. Many of our kids need their B6 intake near this.
Most of your amino acid metabolites are low or moderately low. Are you giving any aminos yet?
There is a need for CoQ10 and Bs and mitochondrial dysfunction will be helped too.
Many of the other markers are mostly gut related including the B12 wasting. The 3-oxo is at the higher end of ref range and the 2-oxo is right in the middle which tells me there is some ammonia building and that happens with Clostridia and there is some Clostridia markers. One idea is to get one bottle of Kirkman's AKG Alpha Keto glutarate and just give one cap in the morning with other supplements until the bottle is gone. That will help to keep ammonia down as you start to heal the gut.
GSE, Biocidin, OLE, OoO, Yeast Aid, Threelac probiotic added on to help with yeast, NAC after you get some yeast down to fight Clostridia are some ideas. Candex or Candidase are enzymes which break up the outer shell of yeast and makes it easier to kill.
South Side Special Services Eval
2 day eval Dec 2 and 3 from 9 to 11:30. Case conference Dec 13 at 12:45. This will determine if she will receive OT services through Perry Township when she turns 3 (Developmental Preschool).
Eval ideas from OT and Psych regarding tantrums and potty training:
- Book: 123 Magic
- If/Then app on Ipad
- don't give attention during tantrums (no talking)
- make potty fun
- Mitochondrial metabolism disorder
- allergic rhinitis
- Toxic effect of metal
- Esophageal reflux
- Candidiasis of the intestine
1. Use diflucan for 2 wks, then start and stay on nystatin. Take Alinia for 3 days for parasites, since showing behaviors at full moon. Since showing signs of yeast and bacteria, treat for now w/o doing OAT. No GSE or Yeast Aid for now b/c diflucan and nystatin. Consider Culturelle or probio Defense by Kirkman [Sheila’s note: Probio Defense has S. boulardii which H reacts to, so not a good option for him at this time.]
2. Consider a trial of ibuprofen 400 mg 3x a day for 5 days. If improved, especially cognitively, add Neuroprotek 2 to 3 caps 2x day. This and Lubiola (Amazon) will help with mast cells.
3. Restart pro EFA as well as DHA for nightmares. Make protein muffins for H and R again.
4. Natural detox agents include chlorella, organic cilantro, modified citrus pectin. Start one at a time and increase as tolerated. Also OoO and OLE.
5. May stop carnosine and amino support for now.
6. Restart cortrex consistenlty. If the anxiety is still an issue, give a trial of BH5 2.5 mg tabs. Use 1 to 2 2x day.
7. Check labs today.
8. B12 shots for focus and attention. A month after he starts B12 shots, begin leucovorin for possible cerebral folate deficiency. Continue if you notice improvement in language, awareness or other. Be sure to continue B12 to prevent B12 deficiency while on it.
9. When ready give DMSA challenge to test for heavy metals. Chelation will help pull out other toxins in addition to heavy metals, like pesticides.
10. Be sure he is getting mag up to 3 caps twice a day. Back off if he gets diarrhea.
recurring bumps/ rash: could be chiggers?
- can start over with supplements and add back slowly to test reaction
- keep zinc at current amount for now
- look for cortrex cheaper online-- for his worries
- continue molybdenum
- let amino support run out but continue with enzymes
- change b12 to the shots
- keep mag and lysine
- iodized salt
- TMG corrects chemistry
- lucovorin is a high dose of folinic acid. As long as he’s on b12 it’s safe. Improves overall awareness of environment.
- School: He needs more challenging work and the LRE (Least Restrictive Environment) with an aide. Work on noise sensitivity, get him in mainstream.
- iron is low. Add kirkman’s iron
- A and D are low. increase cod liver to 4 caps 2x day. Increase D to 5000 IU day.
- Zinc and copper are about equal which is good.
Both kids should return again in 4 months.