What meds do you think I can give my 12 year old boy
He only has a slight malfunction and his only symptom is the squeezing of the throat which is causing him to panic.
We cant operate as the malfunction is too small - we tried all sorts - Lexamil Prozac and we ven tried
epilepsy meds but as we are treating a healthy brain they make him aggressive and hungry and impatient and just not nice to be around
THANKS
Hi there
Sucking and other facial reflex integration might be worth a shot to address any muscular tone in the area. Muscular range of neck muscles (scalenes, hyoids...) may be a contributing factor. it is easy to blame everything on Chiari when there may be an underlying concern being exacerbated by Chiari!
Me personally, I would be leery of the medication pathway as the side effects are not always what you think that they are. Of course, his panic could be addressed by offering alternatives when he feels his throat closing up - a psychologist or councilor, whatever your preference, may have some ideas on coping mechanisms.
Good luck in your search
Throat squeezing IS a scary symptom especially in a child. And symptoms starting in the childhood unfortunately can be followed by more symptoms. I remember only horrible pain behind my eyes starting around age of 13-14 but I was a trooper and told nobody about it. Chiari hit me really hard (headaches etc only around 21 when I was diagnosed ). My advice to you my seem useless and unrealistic but if you have opportunity at all, please, consider taking your child to one of the Chiari centers. They have one in New York, Wisconsin and some other states. They have group of neurologists and other specialists there highly trained to manage our condition (they do not limit treatment to surgeries) and they will be able to sort out what is happening with your child better than anybody else. Also, measure malformation correctly. Mine "doubled" in size on last MRI. No it can't BUT everyone measures it differently (3 MRI, 3 different readings I have), the more expensive MRI is the bigger malformation is?! (cine MRI). And even though they say size doesn't matter, you want to know what it is, have all the correct information, real expectations and best treatment plan.
In my adult life I still can't make it to Chiari center, I am busy with this or with that and deal with local neurologists that tell me "It is not symptom of Chiari" or "do surgery if you have THAT symptom", or " no, don't do surgery" and wonder around confusing readings of my MRIs BUT I would take my child to Chiari center if either of them would turn out to have this condition.
All the best,
I not sure if I have replied or not - so if no reply let me know if sent twice also tell me
Ada said:
Throat squeezing IS a scary symptom especially in a child. And symptoms starting in the childhood unfortunately can be followed by more symptoms. I remember only horrible pain behind my eyes starting around age of 13-14 but I was a trooper and told nobody about it. Chiari hit me really hard (headaches etc only around 21 when I was diagnosed ). My advice to you my seem useless and unrealistic but if you have opportunity at all, please, consider taking your child to one of the Chiari centers. They have one in New York, Wisconsin and some other states. They have group of neurologists and other specialists there highly trained to manage our condition (they do not limit treatment to surgeries) and they will be able to sort out what is happening with your child better than anybody else. Also, measure malformation correctly. Mine "doubled" in size on last MRI. No it can't BUT everyone measures it differently (3 MRI, 3 different readings I have), the more expensive MRI is the bigger malformation is?! (cine MRI). And even though they say size doesn't matter, you want to know what it is, have all the correct information, real expectations and best treatment plan.
In my adult life I still can't make it to Chiari center, I am busy with this or with that and deal with local neurologists that tell me "It is not symptom of Chiari" or "do surgery if you have THAT symptom", or " no, don't do surgery" and wonder around confusing readings of my MRIs BUT I would take my child to Chiari center if either of them would turn out to have this condition.
All the best,
Ok I now see I have not replied
Thanks for your message - scared me too but very helpful.
We stay in South Africa in Johannesburg - there does not seem to be any Chiara centres here.
Anyone on this site from South African and can direct - that would be great
Do I see a neurologists or a neurosurgeon - we are not going to have ops just someone to monitor my son
His only symptom for now is the squeezing of the throat which he is on meds for which is helping
v said:
I not sure if I have replied or not - so if no reply let me know if sent twice also tell me
Ada said:Throat squeezing IS a scary symptom especially in a child. And symptoms starting in the childhood unfortunately can be followed by more symptoms. I remember only horrible pain behind my eyes starting around age of 13-14 but I was a trooper and told nobody about it. Chiari hit me really hard (headaches etc only around 21 when I was diagnosed ). My advice to you my seem useless and unrealistic but if you have opportunity at all, please, consider taking your child to one of the Chiari centers. They have one in New York, Wisconsin and some other states. They have group of neurologists and other specialists there highly trained to manage our condition (they do not limit treatment to surgeries) and they will be able to sort out what is happening with your child better than anybody else. Also, measure malformation correctly. Mine "doubled" in size on last MRI. No it can't BUT everyone measures it differently (3 MRI, 3 different readings I have), the more expensive MRI is the bigger malformation is?! (cine MRI). And even though they say size doesn't matter, you want to know what it is, have all the correct information, real expectations and best treatment plan.
In my adult life I still can't make it to Chiari center, I am busy with this or with that and deal with local neurologists that tell me "It is not symptom of Chiari" or "do surgery if you have THAT symptom", or " no, don't do surgery" and wonder around confusing readings of my MRIs BUT I would take my child to Chiari center if either of them would turn out to have this condition.
All the best,
Your best bet may be to see a speech therapist aside from monitoring the condition which is best done by a neurologist in There are some things an ENT can do including stretchin to make it easier for him. One of our members suffering from OPMD (a form of muscular dystrophy) with a similar complaint got these exercises from her speech therapist. Between proper posture and these exercises she has had some improvement:
Tongue-Hold Exercise:
Effortful Swallow:
Tongue Base Exercise:
FWIW "Chiari Centers" are pretty much an invention of a capitalistic medical system and are designed to increase cash flow. They are not necessary for good care
I did not realize V that you are not from United Stated. It is so great that you are reaching out all the way from South Africa. Chiari diagnosis is becoming more and more common because of frequent use MRI so keep on checking on Chiari centers or may be Medical Research Institute branches that work with this condition in your country.You have to have Brain Institute...call them and they might recommend you something. Thing is (not to scare you again) Chiari is not diabetes... a lot is still under research and some is still not understood, you want most specific and correct information and treatment plan you can get. http://www.conquerchiari.org is very valuable source of information for us (that is updated constantly), if you haven't researched it yet, please, do.
I am not agreeing with TJ1 about Chiari centers. Could this be told to those unlucky of us who went without correct diagnosis for years or were diagnosed with MS instead by some local neurologist? Is that kind of neurologist I would take my kid to? Would I take chances with someone who has never seen Chiari patient before or would I go to neurologist who sees Chiari patients (different cases) daily? I am living in So Cal and I haven't found neurologist yet that would be experienced and eager to venture into Chiari symptoms exploration and treatment. Neurosurgeon experienced with Chiari, sure. My regular neurologist don't ever speak about Chiari, migraine pills and good to go. Neurosciences center in UC Irvine Insitute (not a joke) could not figure which neurologist to send me to because Chiari was not mentioned with any of them and one they did send me too DENIED all my symptoms as Chiari or that I even have Chiari and when my contrast MRI (done in their center) nailed her with Chiari diagnosis she SIMPLY SENT me to Neurosurgeon. Neurosurgeon said I have less than 60% improvement if I do surgery. Fenita la comedia. I absolutely can not get neurologist here to work with my symptoms (even with my PPO insurance). In Chiari center... I am sure I would get more assistance and understand from neurologist. I am not arguing though. This is just my opinion from my personal experience. We all have difference experiences and different opinions and that's why we are here. To share not to argue:).
Best,