update on my son, Brandon

[Jenn]

We went down to the Everett Children's Hospital yesterday, which is only an hour's drive from home, and didn't walk away with any concrete answers, which was incredibly frustrating. We went down under the impression that Brandon was having issues with his heart. He was prediagnosed with P.O.T.S. or postural orthostatic tachycardia syndrome. A condition that can be treated and most likely he would have outgrown. But after the specialist looked at his EKG, and listened again to Brandon's list of symptoms, we were told that he was misdiagnosed, and it sounds like he is having neurological symptoms.

We were told, from the cardiologist, that it sounded like cluster migraines, or small seizures. After coming home and doing some reading on the internet, I personally don't believe it is cluster headaches. His episodes last for 15-20 seconds where he is totally unresponsive and dazed, and doesn't register his surroundings at all. He gets flushed with a rapid heartrate. The cluster migraines last 15 min -3 hours as stated in the reading I did. It really does sound like Brandon is suffering from petite mal seizures. These are happening several times a day and he started having them at the end of summer.

Ok, I'm not happy about a neurological issue, or the fact that they may be seizures, so what is the next step? Another appt with a neurologist and an EEG (I believe) and we can't get in until February! I'm so upset about the wait! It is so upsetting to watch Brandon go through these episodes, and I can't imagine he's enjoying them much. It is interfering with school. I just can't believe we have to wait months for a 2nd attempt at a diagnosis, before any medicine to help him can be prescribed.

I realize there are kids who have more urgent needs than Brandon does, but I can't believe we can't get in sooner to get the help we need. It is ridiculous!

If there is any good in this, it is that Brandon has been given permission to be active again, which was important to him.

Until then, I'm hoping for a cancellation so we can get in sooner. And I'm trying to remember one day at a time...and a breath in and a breath out.

 

[momenteller]

Thanks for posting an update, Jenn. I'm sorry it wasn't better news and that you didn't receive any concrete answers! Are there any other neurologists you can try? Sometimes, if there is a doctor available that can advocate for you, they can call the office to get your appointment moved up. I worked in a neurosurgery office and when we were't able to get the patient an early appt, the doc would get on the phone. Lo and behold, an earlier appointment suddenly became available! Good luck and tell Brandon to hang in there.

 

[Jenn]

thanks, Kate. I'm going to look into means to getting Brandon in for an earlier appt...Feb. is just too long of a wait, imo. And I think Brandon is tougher than I am. He deals with these episodes so well, and I am so very proud of him.

 

[lauralynne]

I'm so sorry that your family is going through this, Jenn. I sincerely hope that somehow he's able to been seen in the near future and get something figured out!

 

[Chinmama]

Is he having headaches at all? I have Complicated Migraines, which mimic stroke symptoms. The first one scared me and my husband half to death, but after a lot of research and a great doctor I've finally gotten them under control with, of all things, birth control pills.

In all my years of reading up on migraines, what he has does not sound like a cluster migraine to me. (of course, I'm no doctor) If they are thinking it is neurological, read up on Basilar-Type Migraine. His symptoms you have described sound similar to those migraines.

They are similar to the ones I have, but I don't faze out. I lose my ability to speak, spell or write correctly. It's frustrating because I know what I want to write or say, but it just will not come out the way I want it to. I will actually write some letters upside down. He may be experiencing the same thing when he is in an altered state of consciousness. To you he looks spaced out, and he feels weird, but knows everything that's going on and just can't do anything about it.

I'm so sorry that he's going through this, whatever it is. It's scary enough to go through something like that yourself, but so much worse when it's someone you love and you feel so helpless. Sending hugs and prayers your way.

 

[Jenn]

Thanks for sharing your experience, Ann, and I'm sorry you have to suffer with this. Brandon had headaches all last school year, which I didn't take seriously enough. They were chronic and pretty painful for him. They really didn't seem to bother him as much when he was home after school or on the weekends, so I thought maybe it was environmental and he was sensitive to something in the classroom. He seemed ok for most of the summer, but then the headaches returned and by the end of summer, these sudden, intense headaches came on frequently throughout the day, lasting 15-20 seconds, causing him to flush and to be totally unresponsive. He kind of freezes, has a dazed look, and won't respond to communication. Then he slowly comes out of it and is fine again.

I'm most worried about waiting so long to get something diagnosed that could potentially get worse. I'm also worried about how this is affecting him at school and his ability to learn. I put in a call to his pediatrician and missed her return phone call, and she will be gone all next week. He has been scheduled with the neurologist at children's hospital for Feb., but I'd like to know if he could just see a local neurologist and possibly get in much sooner. I just don't want to wait. I guess I'm just a typical mom, fighting to protect her kids.

 

[Jenn]

Yay!!! I am so happy right now. I spoke to Brandon's pediatrician last night, who had been out of the office and wasn't scheduled to be back for a few more days, but she had come in to get some things done and she gave me a call back. She hadn't received anything back from Children's Hospital yet, and informed me it could be a month before she did. I relayed to her what I could remember, and told her about my concerns having to wait until February for his neurological appt. She said she would get in touch with a great neurologist locally and have them give me a call. They called today!!! Brandon has an appt for an EEG on Tuesday. This will either confirm or rule out something neurological going on. I'm excited that we may have some answers way sooner then expected. So send good thoughts our way for next week, and I'll update again when I learn something. Thanks to all of you who have wished us well through all of this!

 

[addictedtochins]

Yay! I'm glad for you.

 

[Jazicat]

I'm so happy you are getting in to see the doctor sooner. I will be sending positive thoughts your way!

 

[3CsMommy]

Whew! Sooner is definitely good news. Now he gets to go hang out in Cerebro for an hour like Professor Xavier. Keeping my fingers crossed for even better news from the new doc.

 

[Jenn]

for those following along

Quick update...Brandon had an EEG done the other day which found something going on in his frontal lobe? I have to now schedule Brandon for a MRI to see what is going on. I'm happy we're going down the right path to get some sort of diagnosis as to what has been going on with him, but scared to death of what the result may be. I will update again after his MRI. I really appreciate your continued support. It is good to have friends during this stressful time.

 

[Sandi]

As I mentioned in fb Jenn, I will keep your family in my thoughts and prayers *hugs* to you Jenn.

 

[Jenn]

thanks, Sandi, I really do appreciate all the support, it means a lot to me.

 

[momenteller]

Thinking good thoughts for Brandon! How is he taking all of this testing? Is he worrying as much as I know you must be? Giving my girls extra hugs today and sending some hugs to your family too!

 

[Jenn]

thank you so much Kate. Brandon seems to be pretty relaxed about the whole thing. We try not to show how worried we are in front of him. His biggest issue is that he has to miss more school! In the past, he has wanted to get out of class as much as possible, but he is really enjoying his class and his teacher this year and doesn't want to miss a day. And I've had to pull him out for partial and full days for his tests. If they did a MRI on the weekend, I would do it then for him, but unfortunately, more time to miss. But hopefully this test will show something concrete, and maybe we can finally get the answers we need.

 

[Laurie]

Jenn I know this is very scary for all of you--except maybe not Brandon who seems to be taking it great. I hope the MRI will help determine what can be done to help Brandon with this issue.

And as always you and your family are in my thoughts and prayers.

 

[Jenn]

thanks Laurie. I have had a raging headache for 2 days now...I am always on the verge of tears, and I wish I had Brandon's strength. I've got an appt. made for him on the 29th, and some good news in time for the holidays would be great.

 

[3CsMommy]

*hugs* Hang in there Jenn. You've got the doctors actively looking now; that's the important part.

 

[classycritters]

Best of luck, and we hope for his full recovery.

 

[Jenn]

thank you ladies. I'm hanging in there as best I can. One day at a time, one breath after the next...