Thx deltaforce for such a detailed mail..it is so encouraging...just one question..did ur child so drastic improvement in speech only after the cfd treatment? Thx
No YPVS, he started gaining speech and then language at age 4.5 after I started using SPEAK (also read of side effects I experienced on another thread). He continued gaining language on high EPA fish oil but back and forth communication wasn't there. That we achieved with CFD treatment. We are just 2 month in now and I am truly amazed how the barrier between back and forth communication has disappeared. For the record, his CFD issue is minor but still such a change. At the same time, his hyperactivity has increased (side effect of Leucovorin). The language has gotten more complex and his comprehension has improved. Now we have reached to the point where he can argue with us. I am hoping the treatment continues to help (it is known to plateau in some kids).
Thx for ur reply..so happy for u...my son has speech and can communicate in a limited manner..for his needs..his desires and when questioned etc.still that spontaneous and interactive speech is not there.he is 5.5..we hv started homeopathy very recently...just keeping my fingers crossed..
What is the medicine you used for CFD ?
Do you think high dose of Folinic acid will help here ?
CFD is Cerebral Folate Deficiency. It is diagnosed by testing Folate Receptor Antibodies in serum (and more accurately in Cerebrospinal fluid). We tested in serum as I didn't see need for lumbar puncture. There are 2 types, binding and blocking antibodies. If any of these come positive, then you start Leucovorin (also called as Calcium Folinate). If it comes negative (in serum), I would consider lumbar puncture to test in CSF. The test is done by Iliad Bioscience, costs $200. Only trouble for you guys is, getting serum to the lab within 48 hours of extraction.
Folinic acid available in the market is in the dosage range of 800mcg. The dose you start for CFD is 1mg/kg body weight. So at this rate, you will have to start with 12 or so tablets of folinic acid. Leucovorin is available as 5mg tablets (10 tablets for INR 600). We started with 1 tablet and the goal is to reach 40mg in the period of 4 months.
Be aware of hyperactivity as a side effect of this drug.
@deltaforce Have u tried neuro feedback for your child? I tried to get some info about it but it is more popular in America than in India.Here there are not any trained people who give proper neuro feedback training.
i am in india. Could not find correct tab for "Leucovorin".
if you are in india and using it , then can you let me know the name of the medicine.
No I have not tried Neuro feedback. Its on my mind for a while but I didn't find any trustworthy practitioner around my place. Plus, paying out of pocket in the US is an expensive affair. Not everyone can afford it. Where I live, its $120/session. I don't want to pay such steep price when I personally don't think practitioner is trustworthy.
Its available in India. http://www.drugsupdate.com/brand/generic/CalciumFolinate/19219
Unifolin is what I have noticed in the stores.
I MUST warn you, this is not a medication to take without doing proper testing. If your child doesn't have Folate Receptor Antibodies (FRa) and you use it, the effect of this medicine will affect the child irreversibly (and the effect will be bad).
If your child has speech delay, try all other alternatives before going on this medication. This should be the last alternative, and that too, only if FRa are present.
Disclaimer - Don't take this information as a medical advice.
What is the test i need to do to confirm this ?
Any specific test name ?
I mentioned 2 posts above. When in doubt, consult Dr. Google :)
Just for the record, they call the test only for 'research purpose'. probably to cover their rear ends.
Hi can you share ur mobile no. I would like to discuss my daughter's autism problem with u
U can try comdeall at bangalore, my daughter is getting guidance from them
would u plz tel me the whole journey of this boy n how he is now.. my son is 4.5 now and have some problm in speech he is not using pronoun yet not speeking clearly only i can understand him what he is saying.. problem in grammar as well. plz guide me what to do
Can you tell me what exactly did u follow for your kid
my son is 5 - high functioning verbal with good iq
ASD ND ADHD
PROBLEM AREA: hyperactivity nd lack of understanding and inattentiveness. Mild autistic which ampers his understanding level We are taking OT ND SPEECH ND
TOOK METHYLPHENIDATE BUT IT dint work well so removed the dose
he is not calm thts why he is not following what we say or tell
Tell me your goal so will suggest u solutions
Can you please tell me what diet and biomedical intervention you did ?