Our first visit with a DAN certified naturopathic doctor.

Today, Lucas had his first visit with a DAN certified naturopathic doctor, Dr. Karima Hirani (click here for her home page) at the Hirani Wellness Center in Culver City, who by the way is a REAL doctor with an MD, MPH after her name. This credential was reassuring to me as I wondered the validity of their practice.  The main concern I had was how safe all the supplements I am already giving Lucas is, given I have started them by word of mouth from other parents with IDIC 15 or through various autism support sites such as TACA.  No physician I have dealt with thus far at Kaiser have had anything to say on the subject of supplementation, they would "neither deny nor promote the efficacy of supplementation".

To my surprise, Dr. Hirani complemented me on a job well done with the supplements I have already started, reassured me that they were safe and were rated high (A being the highest rating and D being the least effective intervention) on the list of "Parent Ratings of Behavioral Effects Of Biomedical  Interventions" list (available on Autism.com) generated by the Autism Research Institute in San Diego. This list shows  27,000 parent ratings of various  interventions such as supplementation, special diets, detoxification methods and pharmaceutical drugs that either helped their children get better, worse or showed no effects. The number one beneficial intervention on the list is Detox (chelation) followed by gfcf diet, paleo diet, Vit B12 shots, melatonin (which she said was an antioxidant! I didn't know that! always thought it was just a hormonal  sleep aid),  food allergy treatment, hyperbaric oxygen therapy, fatty acids, digestive enzymes and diflucan (an antifungal)- just to name the top 10 effective treatments on the list.. What was even more surprising to me was that she told me the dosage I was giving Lucas could and should be doubled for maximal effect!  On one hand, I felt relieved that I was not doing any harm to him by the many supplements I have started him on but on the other hand, I wondered if the dosage she was recommending isn't just a bit too much for him, given he is only 22 months old.
Let's take for example, the DHA recommendation: I have Lucas on a daily dose of 800 mg of DHA which even the neurologist said was a bit much, but Dr. Hirani said I should give a mixed EPA\DHA blend at a whopping 1.5G!  She showed me evidence of it helping with learning\cognition, protection against stress, autism, GI issues... I have also read the Japanese article on this but still feel 1.5G at this age maybe a bit too much.  Also, wouldn't it thin out his blood too much creating a risk for internal bleeding?  According to her, this has never been an issue with her patients.  I am hesitant and yet, I don't want to miss out on doing as much as possible for him before the age of 3 when according to scientists, most brain development occurs.  Along with the higher dose of DHA on her Action List, she included Vitamin B12 shots twice a week, double the L carnitine dose from 250 mg which I currently give to 500 mg, probiotic (EnZym-complete DPP-IV II Isogest (given at the start of a meal), calcium powder with vitamin D (important especially if on a gfcf diet), DMG (dimethylglycine, a modified amino acid which has shown to improve speech), Vitamin E Alpha Gamma Blend-through her Wellness Center; and Super Nu Thera.  She recommends Kirkman company for all supplements as this company specializes in products for autism.  She also does NOT recommend the Child Life brand of probiotic and multivitamin I give Lucas.  She said there was "nothing really in it".  Good to know.  Other than the supplementation advise, she recommend I start a gfcf diet, purchase the book "Special Diets for Special Kids", schedule a fasting blood work, get blood work through Kaiser (serum mercury, RBC magnesium, ASO, antidnaseb AB, cortisol, gliadin IgG, IgA, erum zinc, copper); get a NutraEval lab work (worth $800!-not covered by insurance) to test for food allergies and immune system problems, get stool and urine sample for parasite, yeast and heavy metal studies.  She gave me a kit for the urine sample which needs to be sent out to France (yes, France!) for analysis.   I am sure I am leaving some thing out here but luckily, she gave me a recorded CD of all her recommendations for me to study.  She also gave me a contact email for the local TACA leader and recommends I attend one of their meetings.

Whew!

So, on the drive back home as my mind is overwhelmed and spinning, I felt glad I scheduled today's consultation and also quite happy that she was so thorough on all her recommendations.  I have heard about alot of these recommendations through other parents, but it is reassuring to get a professsional's take on it.  The issue I have with actually carrying out the plan is, unlike other cases of autism where the cause is a mystery and a battery of tests need to be performed to find out what actually is causing the problem, my son has a known genetic condition called IDIC 15 that over produces certain factors in the brain causing delays, possible seizures and autism.  His autism is not due to a food allergy, heavy metal poisoning (he is only 22 months, where would he get that kind of poisoning?).  There may potentially be an immune system problem, but how likely would that be in producing autism?  At one point, I would like to carry out all the lab work she recommends but right now, I feel he is too young and aside from his autistic qualities and delays, he seems quite content, eats and poops very well.  If I had all the money in the world, I would do it now, but these tests and supplements aren't cheap and we can't take out a second mortgage to do all these things.  Even I could probably benefit from all these supplementation, who wouldn't?  I think it would be better to wait until he is a bit older and space them out so we don't break bank. Today's consultation alone cost $400 excluding the stool/urine kit and Vit B12. It was money well spent.  Hopefully, we will be able to apply these costs (including future purchases of supplements) to Gabriel's Healthcare Reimbursement Account.  It really is too bad that Kaiser doesn't cover any of this (except a few lab work) and they don't provide their own naturopaths.  Maybe in the future,  they will. I can only hope. 

Living with Autism, the next chapter in our lives.

gorillas and ribbit ribbits

So, we took Luki to the San Diego Wild Animal Park to meet the gorillas, the ducks and giraffes we have been reading about in his bedtime stories.  We spent a nice weekend down in San Diego courtesy of the groupon deal I purchased 6 months ago for 4 tickets to the zoo, one night stay at the Radisson in Rancho Bernardo and breakfast for four.  I was hoping my brother Mik would join us with his girlfriend, Melody, but he informed me that they have broken up recently.  He did come to the zoo with us, alone.  We met up at the hotel which happened to be in the same city Mik used to work so he was well familiar with the area.  He took us to a Japanese restauarnt near the hotel and we discussed why it is  that most Japanese restaurants in San Diego county are owned byKoreans.  We chit chatted about his recent breakup with Melody and how his work was coming along.  Melody apparently is eager to get married and start a family but Mik wants a prenup before any legal commitments.  How romantic.  He also said he quit his job as a director of a electronic startup company  because they never follow his advice and also said he wanted to start his own business.  I have heard this  for about 10 years now. Maybe this time, it will happen.
Lucas fell asleep right away as we arrived at the Park.  This is so like him on top of the fact that he had alot of rice with miso soup for lunch at the Japanese restaurant.  Like mommy, rice puts him to sleep.  I was hoping he would look at the gorillas and start giggling as he does at home when looking at the cartoon picture of a gorilla in his storybook.  Unfortunately, he didn't look directly at them at all.  I am not even sure he was aware they were there. He was very quiet and attentive to the environment around him-the trees, people, other small kids and for that I felt relieved.  He seems to be more aware of his environmnet than before and for that I am grateful.  I get a high on every little milestone and accomplishment he makes.  I think if he really saw the gorillas, he would be scared.   He didn't really care for the ducks or the giraffes and in fact started to cry when the ducks came too close to him.  He didn't really care to pet the goats in the petting area, either.

  Recently, I have noticed that Luki giggles and reacts to specific sounds and words.  He has actually done this around the age of 6 months.  The first word he giggled at was 'purple' followed by Gabriel coughing and clearing his throat which I managed to get captured in video and uploaded to YouTube

Snap out I must for I am now a mom of a special needs child!

        The days seem to fly by so fast with a baby in tow at home.  A few feedings, diaper changes, naps and baths and the day has flown by so quickly. Today was no exception and I just wish I could etch each second with Lucas in my soul and stop time for a while and really be present in each moment spent with him. In practicality, food needs to be prepared, the house needs to be cleaned, etc..Maybe because of his condition, I feel as if something is going to happen to him and I have to distill all this bonding before such an event happens.  It's probably not a healthy way to think but the IDIC 15 Alliance has issued a SUDEP warning which stands for sudden unexplained death .......Researchers have found that some  of the children with this condition die unexpectedly and nobody can find a reason why this happens - somewhat like SIDS but in older children.  The thought of it makes me so very sad and I try not to ponder such an event.  I am declaring to God, the universe and all creation that my son WILL walk and talk. But, as evidenced by his play at the kids play area at the mall today, I have a feeling God's ressponse may take some time.
       While toddlers younger than Lucas were walking and interacting with other children and their caregivers, my Lucas was having a hard time just standing and getting his balance and establishing proper gait due to his ataxia.  He crawled pretty well to get to an activity station but I could tell the physical exertion was making him tired easily.  Upon my coaxing him to play with the toys attached to the walls, he seemed myopically fixated at repetitively spinning one toy item.  And, instead of showing interest at climbing toy cars, buses, he seemed pleased just to gaze at his hand and laugh at it.  One part of me thought,"well, he just wants to be a baby a little longer" and I found it cute.  But, another part of me felt very sad that he was missing out on being like all the other kids, being normal.  As a baby, children are not judgemental of differences,  but I wondered how he would be accepted as he gets older.
      Once again, sad feelings takes me into a deep philosphical thinking mode about life and the meaning of it all and I waste precious time asking myself rhetorical questions of why, why, why?  Once I get into the thick of it, it gets so hard to snap out of it.  But snap out I must, for I am now a mom of a special needs child - words I never thought would be uttered by my lips.  And with that comes a  very disciplined lifestyle and a deeper kind of trust and faith in God's plan for good.  At least, that is how I choose to believe.  Maybe on another blog, I will address all the crazy as well as the profund spiritual rationales I've come across.  For now, I sign off for my precious Luki  has fallen asleep next to me and I want to gaze a little longer into his sweet little face before I fall asleep myself.
Good night.

God Throws Another Curveball.

       Last Thursday, I had a follow up meeting with the geneticist to go over the more advanced microarray genetic screening test for Luki.  I went in thinking I would get a more accurate picture of the extent of chromosome 15 duplication.  The original standard genetic test does not reveal the fine details that reveal how severe his symptoms are; it just told us that he HAD the chromosomal duplication and apparently, it's important to find out the extent of the duplication because the longer it is, the more severe the symptoms.  Initially, the geneticist did not feel it was an important test and was hesitant to put the order in.  In fact, she stated that Kaiser will not pay for such a test since he already received a diagnosis with the first test.  I started looking for companies that would provide this test and was willing to pay out of pocket, if need be.  But, in one last desperate attempt, I petitioned the geneticist and gave a lengthy rationale for why he needed the test and she suprisingly agreed to put in a requisition form for it.  Last Thursday, upon finding the results, she was very "proud" that I insisted on the microarray test as the results revealed a surprise that neither she nor I had even suspected.
Along with the duplication on chromosome 15, we discovered that Luki has another chromosomal duplication (a triplicate copy) on chromosome 17 covering a gene that encodes for neurofibromatosis.    I have dealt with a few patients in the past with this condition and I knew they had very severe skin tumors that were both painful and unsightly but never have I imagined that my son would be affected by it.  Wasn't one duplicated chromosome enough?  He has another duplicated gene?  How could this be?  I went straight to researching more about this condition and found out that  the deletion of the gene is responsible for the disease but a triplicate copy shows very mild , if any, symptoms - usually cafe au lait spots in small parts of the skin. I also learned that this condition was inherited through the paternal line and at about the time of puberty, benign tumors grow along nerve cells and deposit near the skin surface that can be uncomfortable and disfiguring for those severely affected. Other symptoms such as developmental delays seem to overlap with the symptoms he already has with IDIC 15.  I wondered if the mucocoele he was born  with in his mouth was somehow related to this new genetic condition.  He had it surgically removed when he turned one, but the doctor warned that it may come back.  He also had an abscess in his butt when he was born which went away with antibiotic creams.  He has a small cafe au lait spot on a butt cheek which we dismissed as a birth mark, but now I wonder if it is a condition related to neurofibromatosis.  The geneticist did not feel there was much to worry about since he has the duplicated gene and the more severe cases involve the deletion of the gene. But yet, I worry and fear about what to expect in the future.
  God has thrown my little family another curveball and I am somewhat confused about the meaning of it all.  I prayed for the best but was that the wrong way to pray?  It is what it is and God gives what He gives. I realize that my prayers have been dictates to God on how I wanted things to be run.  I wanted the outcomes I wanted, but of course, God's ways are not my ways and His thoughts are not my thoughts.   What I still have faith in is that God's way is the best way and His thoughts are the most loving, holy and beyond the comprehension of my little mind.  This is the faith I cling to these days because the alternative is too sad, scary and depressing to accept.  Besides, even if God is wrong, who is to say the alternative is right?
Why worry about what may happen 15 -20 years down the line when, at this moment, my little Luki is absolutely amazing in my eyes.  Every moment is joyful with him and I am so glad and happy he is with me.  Every  little milestone becomes a cause for celebration - and I mean EVERY little milestone.  I am learning to live in the present moment more and not fret about a future possibility - a hard feat for me but something I am learning to do with my son as my teacher.  And, my son is also teaching me how to change the nature of my prayers.  Instead of dictates and commands to God, now I pray only for Him to surround us with His presence, love and protection as we go through this journey - through the hard times and the easy. I pray that in the midst of the trials, He surround us with good , kind and helpful people; that he lead us to a path of Love and that our spirits would be full of joy.  I also pray that I would be one of those people for someone else experiencing a similar fate.
And with that, I sign off tonight.

February 19, 2013 - Luki's update

The geneticist, Dr. Abboy, has called us for the results of the microarray test.  We will be going in this Thursday at 10 AM.  I am hoping the duplication is minor but we will see what she says.  He also has a autism screening mid March with a developmental pediatrician.  I am not sure why they want to do this test right now.  The case manager of the Regional Center says that the result may not be accurate at this age.  The RC will do their own independant autism screening with a developmental psychologist when he turns 3.  The only reason I can find for this test now is that both RC and Kaiser are trying to get the other to foot the bill for services.  Financial reason is the motive, not the best interest for my son.

I also made an appointment with a naturopath, Dr. Karima Hirani in Culver City.  I am glad she is DAN certified and also an MD but not happy with her hefty hourly rate. She charges $400.00 an hour for the initial consultation and also we need to pay for any extra labs and supplements she orders.  I'm glad Gabriel set aside the maximal amount for his healthcare expense account this year.  We may be using all of it for Lucas this year.

I've also initiated a facebook support group for the Evergreen Church's Journey support group. I've had this strange urge to attend that church about a month before Lucas' diagnosis.  The church is right across the street from home but I never had this kind of urge to go before.  I believe it was the holy spirit guiding me to be a part of the Journey's group.  Thank God Gabriel didn't think I was crazy and humored me by going with me to church.  I think he is getting alot out of the meetings,too.  

On a more positive note, Lucas is more responsive to speech and sound.  He likes to giggle to the sound of "ribbit ribbit" and "gorilla".  He giggles when he gets to the page when the gorilla shows up in his animal book.  I put his hand over mine and tap my mouth while I make Indian sounds.  He gets a kick out of that and now, every time I hold him, he puts his hand to my mouth.  So cute...  I am finding him to be more and more cuter every day.  I can't help but smile when I think of him.  And, I am amazed that he came through me.  I am so happy he chose me to be his mother.  

Well, this is it. I've started a blog.

Well, this is it.  I've started a blog.

When I was younger, I kept a diary.  One day, my nosey brother read it and said it was the most boring thing he had ever read.  I sort of agreed.  I vowed never to journal again.  Well, here I am with a blog and this time, I don't think it will be as boring as before.  Stay tuned.....