Positive stories of recovery of ADHD/ASD....

44 replies, Page 2

YPVS 2015-05-20 23:52:58

 

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
 

 Former member 2015-05-21 02:49:19

 

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).
 

YPVS 2015-05-21 11:16:07

 

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..
 


siddhardha 2015-05-21 11:52:56

 

DeltaForce,
What is the medicine you used for CFD ?
Do you think high  dose of Folinic acid will help here ?

Thanks,
Sid.
 

 Former member 2015-05-21 14:23:06

 

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.

 

priya2015 2015-05-21 16:32:13

 

@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.
 

siddhardha 2015-05-21 16:46:35

 

Deltaforce,

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.

Thanks,
Sid.


 


 Former member 2015-05-21 18:21:20

 

@Priya,
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.

@Sid,
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.
 

siddhardha 2015-05-21 21:30:22

 

DeltaForce,
What is the test i need to do to confirm this ?
Any specific test name ?

Thanks,
Sid


 

 Former member 2015-05-22 14:09:42

 

Sid,
I mentioned 2 posts above. When in doubt, consult Dr. Google :)
Check http://iliadneuro.com/lab_tests
Just for the record, they call the test only for 'research purpose'. probably to cover their rear ends.
 

GP1981 2015-09-10 00:20:38

 

Hi can you share ur mobile no. I would like to discuss my daughter's autism problem with u
 

GP1981 2015-09-13 23:47:44

 

U can try comdeall at bangalore, my daughter is getting guidance from them
 

mdm3 2019-08-19 12:37:27

 

hi nj 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
 

Deepamomy 2020-02-12 22:57:21

 

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 

pls help 
 

childdoc 2020-05-26 16:00:08

 

Tell me your goal so will suggest u solutions
 

Akk88 2020-06-30 07:59:51

 

Hi NJ

Can you please tell me what diet and biomedical intervention you did ?
 

 

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