First off thank you all for taking the time to read this.I would like this thread to be a support group for parents or categivers.If you use cannabis to help with or treat any condition you're child has please post them here Backround: my daughter was born with alot of abnormalities heres a quick runddown currently she is 4yrs old she can not crawl,walk,talk,eat or hear very well. She was born at 38+2 weeks during what seemed to be a normal ultrasound they found Intrauterine growth retardation (IUGR) so a amniocentesis was done and showed a normal karyotype 46,xx. Since there was concern of IUGR we were induced that day. 12hrs after birth she was not nippling after investigating we found she had cleft pallet which is a hole in the roof of you're mouth other thing found are: multipule ear tags foot polydactyly (split 5th digit) right ventricular hemorrhage long thin ribs abnormal cervical vertebrae micrognathia (small lower jaw) failed ALGO termination of conus medullaris L3 claw apperance (hands can not fully open). Now me and her mom suspect: sensory processing disorder scoliosis. Onto the hard part GENETICS: She has a 17q22-q23.1 deletion the size of 2.4 megabases. missing genes are Mpo,PTRH2,SFRS1,C170rf71,CLTC,LPO,MKS1,MRPS23,MSI2,PPM1E,PRR11,RAD51C,SEPT4,TEX14,TRIM37,VE2F1,YPEL2, BZRAP1,C170rf47,CUEDC1,BHX40, DYNLL2,EPX,FAM33A,DDPD1,HSF5, MTMR4,OR41,OR42,RNF43, SUPT4H1 and TMEM49. Whew that was alot to type So far she is the only person in the world to be found missing these genes.Some of these genes functions are still unknown.FISH testing has been done on me and her mom and the deletion was de novo. Hopefully one day we will beable to find someone with the same deletions never know I could meet them here on GC Till that day comes I will try to learn as much as possible about the human genome. sorry for writing a small book here theres more issues with her but my hands are cramping lol.
My heart goes out to you and your wife. I dont know anything about anything you listed above, but im curious and will pass this info onto my wife who is in the medical field. Will cannabis help her condition at all? ~ poke
im not sure if cannabis will help her ive searched for a while now to find someone with similar disabilities too find out if they have tried but no luck I do have alot of friends that have kids that use cannabis to help control siezures and from talking with them they think the only thing it may help is with her SPD I feel she still may be to young Its a hard thing to decide to give a child cannabis but it may be the only thing we can do nothing else is helping with the SPD
My boy will be three next month we have our surgical consultation on the third of feb. He will be three on the 25 of feb. We found out about 8-10months ago he was born with multiple holes in his heart the two biggest being in the upper vent. Which has resulted in his upper to over work and enlarge as its circleing the blood harder to try to get it to his lungs and brain he does not talk yet and his lungs constantly collect fluid as a result so he will be getting open heart surgery to repair his little big heart and flip his sternum to release pressure from his oversized upper that will always be significantly larger then it should be...thank you for creating this thread to allow us to feels as we have the support and hopefully info to help someone else seeking info that one of us may already have! Subbed and supporting all parents with needing children
that is a big surgery what made them look at his heart so late in life? was his newborn screening good? I will be keeping you and you little man in my thoughts I wish i had some info on a surgery like that but seeing how we havent had to go through that im at a loss sorry. we have been through 9 surgeries so far and theres more to come only advice I really reccomend is to talk to other parents at the hospital that are going through the same things.I remember being in the NICU and 50% of those kids had open heart I just wish I wasnt so nervous and actully talked to other parents. please keep us updated here
He is gonna be journalized because of his case he is doin well and was not detected until he was in surgery for a abscess testicle that they were gonna remove when they got in there they were able to save it but almost lost him in the OR so they stabilized him and three days later got his blood oxygen level up and stable enough to release him aswell as diagnose his condition and start this process of gettin him as healthy as possible
that abcess was a blessing in disguise then its crazy how life works sometimes.I cant imagine having to see your own child flatline! everytime i see mine "go under" for surgery it just breaks my heart but gotta keep strong and keep being the family rock as my gf would call it and this is everyones thread only positive vibes
Yes we feel the same way looking back without it well lets just say they said he needs to get it done before he is five or will drastically change his life before 5 he should have a long somewhat normal life but only time will tell now but i believe he has a purpose in this life that we dont understand yet and that keeps my eyes on the future
I feel the same way about life even though theres those days that I just wanna quit all I have to do is look at her shes such a beautiful and happy child
What state do you live in? I work in group homes and it might not be a bad idea getting involved with respit as early as possible. The organization I work for is one of the best in the state and we tend to have a waiting list. We have direct support type facilities all the way to assisted living.
we have had in home respite care for a while now helps alot when me n mom both have to work.but soon I will be leaving my job and stay at home with her seeing as how she now has IHSS
We have scheduled my sons open heart surgery for april 14th, please keep us on your thoughts,thanks again for starting thus thread... turns out he has an extra artery attached to his heart and he has some leakage at two of his valves that they cant fix but say are not detrimental, his heart should reduce in size after his surgery, so that is a bonus and they will be able to fix all the detrimental issues he will have to see a heart specialist for the rest of his life...but the hardest part i signing the release of liability and hearing the realities of the risks of open heart surgery...that part really got me messed up but i have to pull myself together for my family....dang im ramblin now so ill just say thank you for listening and for your support y'all, Red BeardðŸ‘👀ðŸ‘
My youngest has a birth defect that I'm not going to name, but I'll totally PM it to you if you want. It's not all that big of a deal now, it was repaired when she was 2, and she's now 4.5. She's actually the healthiest kid I know of at her age with her defect. She did, however, have a feeding tube until a few months ago. Her abdominal organs are all oddly positioned, though, and her heart is slightly positioned weirdly.
no such thing as ramblin on this thread we all need to vent and get shit off of our chest. I have never heard of a extra artery on anyone is it super rare?
he didnt mention rarity just had a second eco done when we went for the surgical consultation and they were using different angles and positions this time so we asked why the second eco and why it was different the surgeon said he has an extra artery attached to his heart that he needed to look at and plan his process as it has to be done a bit different but should not be any harder or have any negative affect just changed the the game plan a bit
http://www.anatomyatlases.org/AnatomicVariants/Cardiovascular/Text/Arteries/Coronary.shtml Apparently its the rarest form Of that defect this page has all the info if your interested