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        Supporter's Corner >> Children and Cluster's >> My child may or may not have CH
        
(Message started by: splitmyheadintwo on Jun 15^th, 2007, 11:20am)

Title: My child may or may not have CH
Post by splitmyheadintwo on Jun 15^th, 2007, 11:20am

Dear all,

I apologize in advance for the long-windedness of this post, but I'll first sum up by saying that I suspect my son MIGHT have CH, he's 2 1/2 and I need a doctor who will actually try to treat him.

For the past approximately 6 months, he has been having screaming fits at night. He would wake screaming and we could not get him to calm down for quite some time - sometimes up to 2 or even 3 hours. I did some research in the "find a good doctor" department - about 20 child neurologists, developmental pediatricians, behavioral pediatrics, child psychologists/psychiatrists, etc. etc. The doctors either said "I'm not the right one to deal with that" or "We only treat 5 yrs old and above."

For several months almost every single night having to deal with screaming fits, and doctors having speculated as to night terrors, acid reflux, and I don't know how many other guesses, has driven me and my wife to the brink of insanity. We have not had more than a few occasional decent night's sleep for several months. In the past few weeks it seems to be getting slightly better, though.

Let me now mention that from the very beginning, from just after the first few nights, I, as a CH sufferer, suggested that I think it could be CH. Several board-certified neurologist along with several GPs all said "nawww children that young don't get cluster headaches, it's not cluster headaches" Their attitude was immediate dismissal. Now, I personally am of the opinion that they didn't want to even consider the possibility because they themselves had no clue whatsoever how to diagnose or treat it with a 2 year old child! My headache specialist said that yes, children this young and even as young as 1 year old, have been diagnosed with CH. He works for Montefiore which is one of the best headache research hospitals in the country.

My tentative conclusion, and that's all it is - tentative - because I cannot be certain, was based on the following symptoms:

- Always happens within 1-2 hours after going to sleep
- Occasionally tantrums occur during the day, but almost always at night
- Droopy left eye, just like me
- Runny nose (one doctor had the nerve to say "yeah, well he's crying of course his nose runs)
- Grasping at the side/back of head and neck with his fist
- Absolute agonizing terror continuous throughout the episode with only brief few seconds of pausing
- When it finally subsides, it happens within 10 minutes or so... nothing gradual
- Doesn't want to lay still, insists on moving around, going downstairs, wants the lights on, wants to play, anything but lay still and remain in his bedroom.

All these symptoms match my experience as an adult. However, as a 2 year old child, he was not able to tell us what he was feeling... even now, at 2 1/2 he speaks but not enough to describe his feelings, and when he's having the tantrum, he is not very coherent except to say "downstairs" or "Elmo video"

Recently, my doctor recommended a child neurologist affiliated with the same hospital, so my wife and I took my son to see this doctor. Her initial response to my suggestion that it could be CH was outright doubt - that really got me furious. I explained to her about all the symptoms matching mine (she was the one who had the nerve to dismiss the runny nose)... what she wants us to do now is to get an MRI of the brain and possibly take him to a sleep center where he and my wife would spend two nights while they monitored him during the night. We have not gotten to schedule this yet. Though, neither of these things has anything to do with CH; she is just hoping to find something alternative.

I don't really know what can be done at this point except wait it out, hope it gets better, or until he can begin to tell us what's wrong. I suspect that even if a doctor were convinced of the possibility of CH, none of the child doctors that I have encountered seem to be willing to treat it. I need a child headache specialist somewhere in or near New York. I live on Long Island but I am willing to travel up to 2 or 3 hours by car if necessary, if it means actually getting to a doctor who will treat my son adequately. At this point, I'm also resigned to the fact that it's highly unlikely I'll get anyone on my health plan, but I don't care anymore.

I want to conclude by saying that I still cannot be certain that this is CH, and I hope very much that it is NOT, because even though that would leave us with a mystery, it would mean that I at least know my child is not experiencing the kind of agony I know CH to be. But I need suggestions, as I am hanging onto sanity by a thread.

Title: Re: My child may or may not have CH
Post by LeLimey on Jun 15^th, 2007, 1:07pm

Hello there!

First of all stop projecting your symptoms - it won't get you anywhere except worrying. I am the mother of a child with CH and I also have CH myself so I understand exactly what you are going through now and if you would like to speak at any time I will happily call you - just pm me your phone number and a time thats good for you. It is NOT too much trouble I promise you!!

What we need to do is get you a paediatric neuro who will do an MRI and other things to diagnose. There are over 600 headache types and symptoms DO overlap. There is also the possibility it may not even be a headache problem so it needs to be checked asap with an MRI being essential.

Your neuro sounded like a good place to start to ask for a recommendation for a doctor so I would go back and ask again - or even ask if HE is prepared to double up with a paediatric neuro for advice re CH. Don't give up and don't give in - I for one will fight this with you every step of the way. I fought bloody hard for my own son too.

I'll ask around about paediatric neuros in or around your region and get back to you asap or ask one of my friends here to.

We WILL help you get a diagnosis whatever it is okay?

Helen

Title: Re: My child may or may not have CH
Post by lionsound on Jun 15^th, 2007, 1:51pm

Okay you said you live on Long Island, right?

I would suggest you call The New England Center for Headache on Monday. They are closed on Fridays. I go there and I live in Maine. Can't be more than an hour or so away from you. They may see your son or be able to recommend a neuro near you for initial screening and tests. Tell them specifically what is going on and how young your kiddo is.

They are among the best in the country. (google the names..you'll see) Dr. Sheftell is my doc and he is fabulous and kind person, and knowledgeable and they all are wonderful and LISTEN to you.

New England Center for Headache
778 Long Ridge Road
Stamford CT 06902
203.968.1799
Dr. Fred D. Sheftell or Dr. Stewart Tepper

Oh and I also have say that even though the sleep study and MRI seem like a pain they are necessary. You can schedule them while you continue on your search for a good doc. You don't have to wait until they are done to start calling and making appointments.

the New England Center for Headache may not take your insurance however they are worth ever penny you will spend there and they do not inflate their prices. I pay out of pocket for all my visits. The mental relief of being treated well and feeling well is priceless. You won't have to search anymore

PLEASE keep us all updated..
tons of hugs and hang in there!
PF's
Rori

Title: Re: My child may or may not have CH
Post by splitmyheadintwo on Jun 15^th, 2007, 2:19pm

Thank you all for your responses, I will take your advice and get in touch with these various parties. And yes, like I said I need to discover for sure whether or not it is even CH. But when I had MRIs and MRAs on myself long ago, absolutely nothing showed up so if that happens I'm still left with could be, could be not. He DID have an MRI of the neck and lower head a while back, but dumbly they didn't prescribe brain as well. My doctor is dumbfounded as to why they did that.

My son is also very hard to sedate. We did make one attempt at a CAT scan more recently: he was given several doses of Katamine, he was screaming and fighting and they simply could not get him to fall under. They said at that point they can no longer give him any more. So we had to give up.

I'll pursue as much as I can, thanks for the leads.

D

Title: Re: My child may or may not have CH
Post by LeLimey on Jun 15^th, 2007, 2:32pm

Hi D,
Keep checking in as I've asked another friend to contact you with advice too and also the Family Services Team at OUCH US who will be able to help you. OUCH is the Organisation for the Understanding of Cluster Headaches

Helen

Family Serices Team - http://www.ouch-us.org/familysvs/familysvs1.shtml

OUCH US - http://www.ouch-us.org/index.shtml

Title: Re: My child may or may not have CH
Post by splitmyheadintwo on Jun 15^th, 2007, 4:31pm

Thank you, again. I will keep investigating. If it turns out to be CH then you've all given me some valuable leads already.

TY

Title: Re: My child may or may not have CH
Post by E-Double on Jun 15^th, 2007, 8:17pm

Hi D,

I too live on LI specifically in Commack.
Whereabouts are you??

Have you brought your child to Schnieder's?
I would certainly recommend seeing Dr. Maytal a pediatric neurologist.

It terrifies me that my daughter (just 1yr old) might someday get these or the fact that when she does wake up in hysterics out of nowhere that it may be something more sinister than teething or nightmares or that her GERD is flaring up.

I do not doubt anything you say but I will ask if it is possible that habit has developed and that your child is just waking up on schedule in addition to exhibiting odd behaviors during tantrum as a result of learning to obtain mom and dad, comfort of some level or play?

Many infants go through this as did my daughter and despite the fact that my wife and I are SpEd teachers and I am specifically a behavior analyst, emotion takes over and "something must be wrong" when in fact we created a horrible cycle of sleep and temper tantrums which completely seemed to have an organic root.

Please do find the right doctor as we will certainly try to help you with.
Lionsound recommended NECH (Dr. Sheftell) He is my docotr too and is a gentle soul and truly a g-dsend as far as docs.

Have you tried any type of sleep procedures to teach your son to put back to sleep?

It is so hard and believe me it is possible but please first rule out the dangerous conditions by having a doc order a scan, keep data on his sleep and "episodes"

let me know if there is anything you need.

LI is huge but I am here for you if ya need!!!!

Eric

Title: Re: My child may or may not have CH
Post by fentimom on Jan 10^th, 2008, 7:15pm

I know this is an old string but I want to touch base with the user Lionsound about the Docs in CT.

My boyfriend found incredible help from the docs at the NE Headache center but they have closed down and he doesn't know where to go now.

He went to this arrogant jerk named Dr. Gottschalk and that is not an option. He kept him waiting in the exam room for over an hour both visits and a desperate call in between visits resulted an answer saying, "I don't know what to tell you..."

My boyfriend is pretty set with the Verapamil and Lithium and O2, Imitrex and Zomig, but needs a doc to keep prescribing...(duh) and so...any ideas.

Lionsound, where are you going now? Or did you follow Sheftell? Help!

And for splitmyheadintwo...so sorry that your son may be a CH sufferer. It is a total bummer of a life.

Title: Re: My child may or may not have CH
Post by lionsound on Jan 11^th, 2008, 9:04am

Hi Fentimom,
Dr. Sheftell can be reached at the same NECH number. I did follow him because I always have been a patient of his. I would try calling there to get a referral to a better doc if he can't see your husband. I'm not exactly sure what, if any, insurances Dr. Sheftell is taking so be sure and ask.

I do not know where the Drs. Tepper went. However, it might be worth a call to Yale neuro because I know Mr. Dr. Tepper had an affiliation there.

Feel free to PM me if you want more info :)
Let me know what happens, okay?
PF's,
rori

Title: Re: My child may or may not have CH
Post by Crappy on Jan 16^th, 2008, 2:25am

splitmyheadintwo,

We never heard back from you. Thanks to others posting on this thread, your post came back up, and I saw it for the first time.

Your post rang home for me because of what just happened this week with my 8 year old son. My chronic CH diagnosis came only 8 weeks ago, but I also have episodes that seem akin to migraine auras - a "high" feeling, yawning fits, etc. Through my own research, I was convinced I was having simple partial seizures, so I convinced my doctor to order an EEG for me. It came back negative. Eventually, my CH diagnosis [kind of] explained most of my symptoms, so while I had learned alot about seizures it seemed they weren't related to my condition.

A month ago, I noticed that my 8 year old son's eyes were rolling up or to the side, and fluttering. Nobody else seemed to see it, or didn't think anything of it. My wife's opinion of illness is "stop whining - it doesn't really hurt." I asked her if she had noticed the facial and eye twitches he had started having, and she said she hadn't noticed anything. Then I started elbowing her when they were occuring, and she said they were probably just nervous ticks.

After seeing these odd eye movements, with all of the research I had done for my own symptoms for many months, I was convinced that he was having simple partial seizures, so I setup an appt with his pediatrician. I told her exactly what I thought, and pretty much demanded an EEG. Well, it came back positive for simple partial seizures. We're seeing a pediatric neurologist a few weeks from now.

Long story short, if he's treated now, hopefully he'll avoid having a full clonic-tonic seizure (grand-mal seizure). People who haven't suffered from a condition like this tend to dismiss the signs easily, but if I had done so my son may have ended up with a full blown seizure before anyone noticed.

Seizures, like CH and Migraines can be genetically related, so even though you should hope your children don't have it, you also shouldn't discount the intuition that comes from having experienced the symptoms yourself, and the knowledge that comes from having read much more about the conditions than many of the docs you meet.

Push for the proper tests, and don't give up until your kid's condition is properly diagnosed and treated.