Need help with son (long, sorry!)

[hipmummyk]

Hi all

I am new to the pediatrics side of things, but have been on ASAP for a couple of months now. I have CM (and not sure what else yet- I am going to TCI in a couple of weeks). I have some questions about one of my kids and need some help with what direction to take with this.

Ok, some background info first: My son will be 11 at the end of the month. He was born at 42 weeks by emergency c-section (according to the doc he was presenting face-first because he had a big lump on his forehead that went away fairly quickly, and my pelvic opening was too small).

This child had incredible head control from birth, and his gross motor skills developed rapidly. he was a colicky infant and hated being held sideways and hated being laid on his back or stomach. He was happiest when he was upright so he could look around. He became quite a headbanger and would frequently headbang against my chest or face, and eventually against the wall or the refrigerator. He was quite healthy, apart from the usual kiddie runny nose.

He had night terrors, or so we thought, because he would wake up screaming at night. This lasted for a number of years. He always seemed agitated by something. He also wet the bed until he was in 2nd grade, and he still "dribbles" on occasion and will have a wet spot the size of a nickel, sometimes a quarter, on the front of his underpants.

He has always been quite hyper, but when he isn't hyper he can be quite lethargic. He was diagnosed with PDD-NOS at the end of second grade, having been dx'ed with ADHD the year before.

He sleeps in a fetal position most of the time (makes me wonder about tethered cord).

When he was in 2nd grade he was at a friend's house and he ran to the bathroom to pee, but he ended up wetting his pants because he said he couldn't remember what he was supposed to do when he got to the toilet. A few months later, he spilled milk all over the floor and he said "sometimes when I get the shakes, my hands don't feel like they can hold things very well". I questioned him about this because he had never mentioned it before and it freaked me out. He told me that it had happened a few times. I took him to the pediatrician, who sent him for an EEG to check for seizures, but that came back normal. He mentioned that he had headaches sometimes, too. I found a neurologist and the neuro had him do a 24 hour EEG and that came back normal also. The neurologist diagnosed him with migraines.

Fast-forward to last year: the neuro had an MRI done because my son mentioned that he still had some problems with feeling funny around strobe lights (he had been bowling at one of those places where they have black lights and strobes). We also noticed that if he played video games, he would get really aggressive and out of sorts, so we stopped letting him do that (we didn't have any at home, but he would play them at friend's houses). The neuro told us that the MRI didn't show anything, but that he is photosensitive and has migraines. We went back to the neuro in November and the neuro "released" him from his care, saying that it appeared everything was fine so he saw no need to continue to see him.

I had just found out about my chiari, so I asked the neuro if his MRI showed chiari and he gave it a quick glance (I never saw it) and he said "no".

Well, now I am really beginning to wonder about my son. He is having more behavioral issues/aggression/anger and he is more lethargic at times. He has also discovered that he can contort his body into all sorts of weird positions (EDS perhaps? I suspect I have it) and I never knew he could do that because he has always been so uptight. He can't sit in a chair well (always pulls his knees up to his chin when he sits) and he would prefer to lie down. Just last night he asked me and my husband about sperm (because he is hitting puberty) and if it is sticky. We asked him why, and he said that he thought he was peeing it because when he pees, it is sticky. Hubby asked him questions and it doesn't sound like he was masturbating. I googled sticky urine and came up with info on the wrong diagnosis website that mentioned it could be connected to chiari (something about increased intracranial pressure causing this- I don't remember exactly what it said right now).

So, I want to take him to the pediatrician and ask him to check for chiari, but I don't know how to go about being sure that everything gets checked out. I am stressed enough as it is with all the stuff I am finding out about my own CM, and am busy trying to get organized for my trip to NY to TCI. The kids will be staying at home with my mom. I don't know that we can afford another trip back up there for my son, especially just based on my suspicion.

What exactly should I say to the pediatrician to get him to check everything out? Or should I bypass him and contact Dr.Oakes (a pediatric chiari NS who is here in my city, but I don't know if he is any good)? I am annoyed by the NL that I used to take my son to...it is nearly impossible to get in to see him, and I feel as if my concerns were brushed aside, so I don't want to go back and see him.

Help! Does any of this with my son sound familiar to anyone?

Katie

[brianfsmom]

Wow, that's tough.

Can you go directly to the imaging center, and sign out the original films? That would bypass the doctor directly and you could get a second opinion. (take them with you to TCI!) Or does the doctor have the only copy?

[hipmummyk]

I believe the doctor has the only copy. Do you think my pediatrician could request it?

-K

[brianfsmom]

Of course! Those films belong to you, anyway. You could even request them, but you'd have to say why you wanted them. Good luck to you.

[hipmummyk]

My confusion in doing this is that the doctor has switched locations, so I don't know if I need to contact the place that did his MRI, or try to get it through the doc. The doc is now under the umbrella of the children's hospital and I went and asked how to get his records and they told me I had to go into the hospital downtown and fill out paperwork.

Would the place that did his MRI still have a copy I could get? Or do they send the only copy to the doc?

Thanks for your help!

-K

[Janice]

The MRI facility should still have a copy or at least be able to put it on a CD for you. Do you have the report? If not, I would ask for that also.

Take care and I pray for the best outcome for you both.

[hipmummyk]

Thanks Janice! I will look into it next week. I just came across the paperwork from the MRI facility from when he had it done last year (getting papers organized for taxes, LOL). I will call them and ask what the procedure is.

Katie

[brianfsmom]

The MRI place should have a copy, or hopefully, like Janice said, they have it and can print it out or put it on CD for you. However, if he kept the original, they might charge you for an extra print out.

If he has the originals, and moved them over to the new hospital, that's better for you, too, because it's all handled by a separate department, and he won't even know you took them.

[hipmummyk]

Hi all!

I finally remembered to call the MRI place today and they said they would print out his MRI and I could pick it up in the morning! I had no idea it would be that easy! Please keep your fingers crossed that it WILL be that easy!

I will let you know what I see in it after I get my hands on it. I am so anxious to see it!

If I DO see anything chiari-like, I will take it with me next week when I head to NY to see the docs at TCI. Do you think the docs there will look at it during my appt?

Katie in AL

[Janice]

I don't know if they will look at it but I think you should take it just in case.

Take care,

[LIZARD110366]

Hey, Katie.

My 13 1/2 yo son was dx'ed with high-functioning autism at 2 1/2 and a 13 mm ACM I at 5 1/2. I am finding that many autistic kids have Chiari and other lesions in common. You'll need to get him an MRI as soon as possible, and yes, I would book the appt with Dr. Oakes. depending on the size of the herniation, your ped may not have much to say. Because of my son's herniation size and his ped's unusual knowledge (though limited), we got the dx right away. Unfortunately, we have yet to be able to get to a nsg who knows enough about both the autism and the Chiari and hope to see Dr. Frim at some point, as he keeps getting recommended, and Drew is showing some signs of autonomic disturbance (oblivious to cold, intolerant of heat, inability to sense thirst, inability to sweat even when he drinks enough).

Good luck to you!

LIZARD (congenital hydrocephalus dx'ed in infancy, epilepsy, hypoglycemia, hypothyroid, profound D deficiency), mom to 13 1/2 yo Drew (high-functioning autism, 13 mm ACM I, no decompression yet, but showing signs of needing it soon)

[hipmummyk]

Thanks Lizard! I posted some of his MRI pics in the main folder for CM and SM...it's titled something like "MRI-Anybody see anything?"

I'm going to take his MRIs with me to my appt at TCI (way easier than taking the child with me for now, LOL) and see what the docs there have to say. So far, it looks like crowding to me, but I don't see any herniation. His brain does seem to sit low in his skull.

Have you seen Dr.Oakes? Do you know anyone that has been to him?

Katie

[LIZARD110366]

Have you seen Dr.Oakes? Do you know anyone that has been to him?

Katie

We haven't, actually. We went to TCI about 4 years ago (before Drew had significant symptoms) and to my nsg. Right off, I don't know if anyone I know has been to Dr. O. I know he has a good name, though. Good luck! (Also, if you find out he does have ACM, please come to my list:

http://health.groups.yahoo.com/group/autism-chiari/. )

LIZARD

[Bear]

If the doctors you are going to see don't or won't look at your son's films, Dr. Carson in Baltimore will. You can just go to The Johns Hopkins website and get his contact info. His physician's assistant is very nice and very helpful. After their neurosurgeon's look at the films or cd, (whatever you send) they return them very promtly. Dr. Carson is a wonderful neurosurgeon.

[gretchiecat]

Are you talking about Dr. Jerry Oakes at UAB? If so, he was awesome in dx and treatment of my daughter when she was 4. He performed surgery on her, inserted a shunt at T11-T12. She is now 8 and has had no complications what so ever. We traveled from Chattanooga, TN to have him do the surgery.

I hope this helps.

Gretchen