I prob shouldnt post this cause its very personal…yet I think it could possibly help others so here we go.
My eldest son has some troubles about which I’ve posted before. Mainly, he has two huge things going on - lack of desire to eat and lack of ability to attend (pay attention) for any length of time.
He’s been “diagnosed” as being on the autism spectrum. Also as ADD/ADHD. And I read everything and anything I can get my hands on regarding these and also about lack of desire to eat.
His docs are pushing ritalin and ritalin-types of meds to help him “organize” and concentrate. Yet, I am SO uncomfortable with that. Although it might help him with some of the symptoms, it would not address HIM as he really does not fit completely into either Autism spectrum OR add/adhd and these drugs further decrease appetite and weight gain. So we’d need to add MORE drugs to increase his appetite and he very well might end up a drugged-out zombie. Its always made me VERY uncomfortable since he really doesnt fit into the category they want to stuff him into.
With much (you cannot imagine HOW much) googling, I found that there is a neuro-peptide called NP-y and a hormone called ghrelin that when the body doesnt produce enough of it causes - yes…low appetite, inability to gain weight and lack of ability to remember things! This describes him EXACTLY as the other diagnoses never did. These neuro-peptides and treatments to increase (or decrease) them are fairly newly discovered and for the most part, used in clinical trials and experimental treatment. Yet it fits SO perfectly.
I contacted one of the top researchers in neuro-peptides from Yale University and she responded to me within 15 minutes!! With the name of a doc who would see my son, evaluate him and be able to discuss these things without pushing the “traditional” course of ritalin. She COMPLETELY understood how my son does not completely fit into previous diagnoses and perhaps could benefit from some neuropeptide therapy.
NEVER give up when you have troubles that you think are not being properly addressed…there ARE people out there who understand and want to help…and may they be SO blessed in all that they do.
Anyway, the message here is never give up when you think theres more to the story than the docs (or whomEVER) see…they do NOT know all. So seek until you find and INSHALLAH … all will be fine.
Thanks so much for sharing this.
A few years ago, my dad was diagnosed with arteries blockage and every doctor was telling him to go for Bypass. But for some reason, our healthcare physician sent my dad's case to a cardiologist at Yale (we live in CT), and mA he told us there was no need for surgery IF they could control the blockage with medicine. Alhumdulillah, it worked.
MO3. That is indeed wonderful, and I know what you've gone through with the little kido. Hats off to your persistency and faith. InshaAllah things will work out just fine.
Shay, that's so nice to hear about your dad as well.
MO3, that is amazing! I swear, your son is lucky. He has a mama that loves him so much! But then, he must be a special boy too...I hope things go well with him. Inshallah.
Shay, my dad had to go through with the bypass. He went for some testing and they never let him leave the hospital...said he was a walking heart attack! (Allah na kare) He is better than ever now. Brand new heart, alive and kicking Alhumdulillah.
thats great Mof3.. i hope your lil boy gets all what he dreams and wishes for.
A mothers love can do so much.. really and this is proof. I'll br praying for your family.
shay, I hope your dad is well now, Inshallah. I know how you must feel. My dad had a stroke a few years back and what i would do to make everything normal again for him...
Alhumdulillah , Allah is very merciful. I pray to Allah that Allah shower your family with his mercy and give you all best of happiness and health. Ameen.
mamaof3 thanks so much for sharing, i can't express how happy i am for you and for your little boy
mA you are amazing and such an inspiration
sadzz im really sorry to hear about your dad having had a stroke :(
:)
He's Mashallah doing lots... its just not the same as before but probably still 90-95% the same... lekin if you've known someone who is capable of so much and not being able to do it to 100%, it hurts..
whatever the case, Alhamdulillah he is still with us, as jolly and lovely as ever :)
Kudos to you Mamaof3!
A niece of a very close friend just does not eat no matter what. She's had multiple blood tests done and doctors can't figure out why she won't eat. I will tell her about this.
thanks a bunch :)
Mama thats awesome!!Inshallah everything will be fine!! btw..have you read about the importance of gluten free diet…I babysit a friend’s baby, who was diagnosed with being on the autism spectrum as well…he is 3 years old (diagnosed at 2yrs)… extremely detailed oriented..knows every state and its capital by heart…and musically inclined…i mean this boy is pure precious…
He had the same problem…did not eat anything…didnt like chewing food..so he would swallow it…and we had to basically puree all his food…another thing we noticed was that…he doesnt like to talk and socialize in pre-school…will absolutely not follow any directions…loves shapes and objects (a very clear sign of the child on the specturm)…anyway..he has made amazing progress since he has been on speech,food,and general therapy…his therapists believe that by the time he is in high school…he will have no signs of autism…this is also due to the fact he is at the lowest level of the spectrum… we havnt given up either…and the most important part is the team effort that goes hand in hand with every little detail…kids are such a blessing… lots of prayers for you!!
Mamaof3, may Allah bless your family! Going through some things myself although on a much smaller level, i have realised, doctors may not always be right and ultimately the responsibility of finding the best care lies on us. Kudos to you for not giving in.
Thats amazing Mamaof3, your son is lucky to have such a dedicated mother like you! I pray that the new theraphy is of great help to him and that all goes well. hugs
Shay, thats wonderful news about your dad! You must all be so happy that you went for another opinion!!
A bit of an update...first Chanda it was great to hear about how well your friends boy is doing! We did try both gluten free and casein free diet even though the (somewhat unreliable) tests came up negative. Neither diet helped and this makes me have some doubt about him being on the autism spectrum. He does have some symptoms - loves to line things up, spin wheels, had trouble with eye contact and repeating words (echolalia) but those things have diminished greatly with the speech therapy and OT he gets. Anyway, he is also very active, unable to sit still, unable to attend to tasks. So he KINDA fits high-functioning autism, also KINDA fits ADD/ADHD.
This whole Grhelin thing sparked my interest because it improves gastric motility, body fat (he has never had that layer of fat no matter how much he ate), appetite and controls frenetic motor activity. This fits SO perfectly.
So the researcher from Yale spoke to her practicing colleagues and we found out that this is a pretty recently discovered neuro-peptide and is undergoing some clinical trials on adult cancer patients who develop anorexia due to cancer treatments. They are not all completed and there is no commercially available Ghrelin treatment YET. But we will keep an eye on all the developments and Yale will keep us in mind when and if they go ahead with pediatric clinical trials. There are docs in Sweden and also in Kyoto doing similar clinical trials so I hope to see more news on this in the near future.
never give up..exactly. and you personify it so well, keep at it, you and the family is in our thoughts, even if we are too delayed in responding to msgs.
we havnt given up either…and the most important part is the team effort that goes hand in hand with every little detail…kids are such a blessing… 
lots of prayers for you!!