Working Through Some Medical News About Jacob

[twins r fun]

Sorry if this is long. We took Jacob to a specialist today and were told (to our complete surprise) that they think he has mild to moderate cerebral palsy. We're a little shocked by the information since in a full year of going to different people to try to figure out why he walks funny this has never been brought up as a possibility. We're trying to figure out whether to believe it, what it means, where to go from here, etc. So I thought I'd turn to the trusty boards to work through my thoughts and get some feedback. We've always assumed and been led to believe that there was some physical issue with his feet or legs. He's been to an orthopedic surgeon, a NICU clinic for a developmental evaluation by a neonatologist, two podiatrists, and been followed by a PT from the county infants and toddlers program. He's been in and out of braces for having flat feet, pronated ankles, and tight muscles. We've gotten conflicting information about whether there really is a problem, what the problem is, whether you can correct it, whether the braces help, etc. We kept going to different people because nobody seemed to know what to tell us, it seems to be in nobody's area of expertise, and we couldn't get any two doctors to tell us the same thing. After a 4 month wait for the appointment we finally got to see a pediatric physiatrist today (specializes in physical medicine and rehab, but has gone through medical training unlike a PT). He told us that rather than being a problem with his feet and legs, there was some damage to the part of the brain that is controlling his lower extremities. He said it's causing generally low muscle tone in his legs which makes it hard for him to have much control when walking and also causing a very tight right calf muscle which makes it difficult for him to get his heel to the floor. He wants to do an MRI to look for brain abnormalities, keep him in the leg braces, treat the tight calf muscle with botox injections (yes, you read that right) every 4-5 months coupled with twice weekly physical therapy for a month after each injection, ongoing physical therapy at other times, and a series of progressive casts for him to wear at night. The doctor seemed very thorough and knowledgable and definitely did a good examination of Jacob and his developmental history. Plus there was a possible abnormality that showed up on a head ultrasound when he was days old (but then didn't show up at 4 weeks old). BUT this seems like a diagnosis out of left field to us so we're going to get a second opinion. Like I said so far we haven't been able to get two doctors to tell us the same thing, so maybe we should stop getting second opinions, but it's hard to believe a somewhat subjective diagnosis based just on this guy's physical examination and opinion. I talked to the pediatrician when I got home and she is as surprised as we are and says the second opinion should be from a pediatric nuerologist, who can decide whether we really should get an MRI or not. She's also a little freaked out by the botox injections, which she says she's heard of but they are fairly controversial as to their effectiveness. So we'll try a nuerologist (I'm sure another 4 month wait). In some ways it wouldn't matter whether he had CP or not as long as he got the therapy/devices, etc to help him walk better, but if it's possible that it is still a physical issue that might need to be dealt with differently (with surgery for example) then we don't want to be going down a wrong path. Plus I think I'll have to investigate these botox injections a little more thoroughly before I sign him up for that. As always, thanks for listening! I'll keep you informed.

[jubilee]

What a day you all have had... I will certainly keep Jacob in my prayers. And hope you get some concrete answers from doctors that agree with each other! How frustrating and confusing that must be.

[Melanie]

Wow, I'm sorry you are going through such a three-ring circus just to help your little one. Did he have a birth indicative of CP? Or is that not always the cause? We have a friend with (what I would call) severe CP, and it was from a difficult delivery.

[AngelaS]

Wow, I'll be praying that you find the answers you need! What a frustrating time!

It seems to me that two of the McCaughey septulets are getting injections of some kind to help them be able to move their legs. I'll see if I can find any info...

[sweetbasil]

Goodness, Nicole- you are such a strong mama. You sound so calm and together about all of this. Please know that I'll be thinking of your family, and Jacob especially, over the coming weeks and hope you all get happy, conclusive news soon!

Big hugs,


(edited for spelling error I didn't catch--- typing one-handed w/baby!)

[NEVE and TRISTAN]

Nicole,
OH I am sorry you are going thru this.
I know of a large group of neurologist in the Fairfax region of the DC area (I think you are in MD right???)...it is a huge group and if I can help in anyway let me know. I might still beable to get one of the neurologist to get him in if you find that you are stuck with a 4 month wait. I use to have a very good report with one of the MDs in this practice, and though he is not a ped neuro he might beable to pull some strings since in his group there are ped neuros. His name is Leslie Williams (a male) and I think he would remember me. Within this group is a pediatric neurosurgeon that I LOVED named Kathleen French, she might also beable to direct you.

When I worked at Mount Vernon Hospital (INOVA) when home from college breaks I actually was the secretary on the physiatrist floor. That one unit is recognized country wide for their rehab unit so a great bunch (James Brady was rehabed by this group)...They had ped patients but no real toddlers, but I'd like to think that I might beable to get you an appt there if needed. I LOVED a physiatrist named Stephanie Giorlando there...she's a mommy and is just so kind and sweet, assuming she is still there I could call her or you could reference my name (I'd have to give you my maiden last name) but doubt she has ever known another "Neve" :)...

Email me if I can help in anyway...
[email protected]

Neve
AKA "mama2be"-forgot password
and Baby Boy Tristan born @UNC
Feb 25, 2003
Brother to 3 pups "gees" and 2 kitties

[Andrea S]

Nicole,

Wow! How frustrating for you guys not getting the same info from 2 doctors. I hope you you get some answers soon. I agree about seeing a pediatric neurologist. I wonder if the specialist you saw today will do his casts and therapy without the botux injections until you get your appt with neurologist. Please keep us updated.

Andrea
mom to Andrew 8/14/02

[McQ]

So frustrating that the doctor's haven't been able to give you the same story. I hope you get some straight answers soon. I'm thinking of you, your family and Jacob.

Allison
~ mommy to Declan 3.24.03

[Tracey]

My sister is a pediatric physical therapist. I have spent a good deal of time talking to her about some of these issues because my best friend has a child that is developmentally delayed. She said that CP is extremely common in twins...one twin having CP and the other not. Maybe something to do with sharing resources in the womb...I don't know. The only way to rule out CP is to do the MRI. If it were me, I would definately have it done so that I knew for sure what I was dealing with. MRIs are not painful or dangerous. All of the things you mentioned--- hypotonality (poor muscle tone), sensory issues, muscle tension---are characteristic of CP. My friend's daughter has these problems. At 14 months she has just started to "booty scoot" crawl. At her 12 month well baby check her doctor was not concerned that the baby was not crawling or walking. Everyone else is concerned. It's like everyone else but her parents think something is wrong. When the doctor tells you everything is fine and that is what you want to believe anyway, you go with it. She had a traumatic birth and was not breathing when she was born and the doctors have STILL never suggest CP (at this point anyway). My sister said she probably has mild CP, but nothing will be done until she falls a full two standard deviations below the norm. I am debating whether or not to say anything to my friend, but that is a different issue.

She also said that many doctors are hesitant to diagnose CP for insurance reasons?????? Also, maybe it doesn't change the treatment plan having an actual diagnosis, I don't know. Botox relaxes muscles but sounds pretty "non-traditional" to me. There are plenty of other techniques to reduce muscle tension. Injections sound scary and painful for a child to endure for questionable benefit. If you stay with this doctor, I'd tell him you wanted to see the medical literature promoting this practice. All I can say is that CP does not sound out of left field from what I've been told, but I'm an economist not a doctor, so what do I know :). I hope you find some answers and get some help soon.

[momathome]

Nicole -
I don't really have anything to add other than to let you know that I am thinking of you and will say a prayer that things go well for Jacob. Take care and good luck!
-Lauren

[cinrein]

Nicole,

Hugs to you and your family. I'm so sorry you are dealing with this and getting different stories. I will certainly keep Jacob in my prayers.

FWIW, I would take Neve up on her offer to get you in to see a specialist earlier. My mom recently needed the services of a neurosurgeon and got hit with a 4-month wait. She was in dire pain, so my brother called a friend at the hospital he has admitting privileges at and she was operated on within a week.

Cindy and Anna 2/11/03

[amp]

Nicole, I have nothing to offer except my hugs. And hugs from my Jacob to yours. I'll be thinking of all of you and praying that things turn out well for little Jacob!

[khakismom]

Nicole, my thoughts and prayers are with you and your boys while you work thru this. I pray you get the answers and help you need! Big hugs to you!!!

[jojo2324]

Nicole, I'm so sorry!!! I can only imagine how you're feeling. I definitely think a visit to a pediatric neurologist is in order...After all, they are trained in the specialty, and should have more experience to draw from.

And if Neve can help, take it. You don't need 4 months of wondering to go by, and not even wondering, but 4 months of treatment that might be required if CP is even the case.

Thinking of you tons...Give those boys a big ol' smooch from Auntie Jojo!! :)

[jennifer13]

No advice, just sending good wishes. You must be exhausted. Take care of yourself- your boys are so lucky to have you.

Jennifer
Mom to Norah 5/23/03

[nigele]

Nicole,

Sorry to hear about Jacob. It must be heart-wrenching for you and your family. I know how hard it is to have a child with medical issues and want you to know you'll be in my thoughts. Please do keep us posted.

[jd11365]

I really have nothing to offer information wise, but want to send hugs and support to you and your family. Please continue to keep us informed as I know we are all very concerned about all of our babies on the boards. I hope you find out positive news soon...definitely check in on Neve's contacts to avoid that 4 month wait. Sometimes a little name-dropping can be good thing!

Jamie
Mommy to Kayla
5-1-03

[celfsh]

Nicole,

So sorry you are going through this. I am thinking of you and hoping that you get some answers soon.

Hugs,

Celeste

[egoldber]

I would definitely seek out a second opinion from a pediatric neurologist. But from what I have read (for awhile I was concerned that Sarah might have mild CP), it isn't uncommon for mild CP not to be diagnosed until your child is a little older and all the various aspects of the disorder become clear. I know how frustrating it is to be told different things by different docs. Perosonally, I would get the MRI, but not do any injections until a definitive diagnosis is made.

But I am so thinking of you Nicole! You must be freaking! I'll definitely be sending lots of good thoughts Jacob's way!

[Rachels]

I've worked with several kids with CP, and my stepson's brother (did you catch that?) was just diagnosed with it at age EIGHT. The milder cases really can take a while to diagnose, and getting the kind of runaround you've had is pretty common. I know you must be upset and anxious, and I think the MRI makes great sense. I just want to reassure you that he's going to be okay either way. If this is what he has, then it will help you to know it so that you can get him the resources he needs. Hang in there, mama. You've really been through it! I'm thinking of you.

-Rachel
Mom to Abigail Rose
5/18/02

[natividad]

Nicole, I have been off the board for a while, but had to respond to your post just to let you know that I am thinking of you and Jacob. You will be in our prayers. Also, I wholeheartedly agree with Rachel and the others who advise on getting the MRI. This makes more sense to me than the injections. Good luck and hang in there!

Naty,
Mommy to Alexander

[starrynight]

Nicole,

I will keep you and Jacob in my prayers. Good luck and keep us updated if you can. *hugs*

[nitaghei]

What a wringer to go through!! A consult wih ped neurologist seems be called for. And take up Neve on her offer. Where are you? In Maryland? Johns Hopkins in Baltimore and Children's in DC have great people. We saw a ped neurosurgeon at Childrens who was fantastic, when Neel needed an MRI when he was 3 months old to determine whether he would need spinal surgery. It really is non-invasive (except for the sedation, which did freak me out), and it did give us a definitive answer.

Sending positive thoughts your way!!

Nita
mom to Neel 01/05/03
dog mom to a cocker and a PWD

[chrissyhowie]

Nicole,
Just wanted to let you know I will be thinking of you and your family. I hope all goes smoothly for little Jacob.

[lukkykatt]

What a tough thing to go through! Jacob is lucky to have such dedicated parents!

I know that you feel like you've been travelling down alot of different paths, but I think you are doing absolutely the right thing in getting a second opinion, since this is such a different diagnosis. If you haven't been to Hopkins yet, that is a great option. I know someone who works with children there and could get a name for you if that is someplace you would want to go. Or has he been to Kennedy Krieger yet?

Please keep us posted and we will definitely have our best wishes going out to Jacob.

[ddmarsh]

I'm so sorry to hear this, sorry for all of you. I sure hope you are able to get in with someone quickly.

Hugs -

[Marisa6826]

Nicole-

I'm sorry to hear that you're going through all of this. I would be happy to hook you up with some other Mommies of twins that have developmental delays - some of which have CP. Others that have been through the neverending gauntlet of doctors - not unlike yourself - trying to find out what's wrong with their child. I'm sure they'd be happy to talk to you. There's one Mom in particular that I'm sure could talk you through this as her daughter is in a similar situation although a little older (I think she's about three years old).

Please PM me if you're interested.

HUGS

-m

[Tracey]

I would still get another opinion, but this doctor may be onto something (and a specialist for a reason). Alot of what I'm reading stresses early intervention. I found this info on this health site:

http://www.healthatoz.com/healthatoz/Atoz/ency/cerebral_palsy.html
Medications

Before fixed contractures develop, muscle-relaxant drugs such as diazepam (Valium), dantrolene (Dantrium), and baclofen (Lioresal) may be prescribed. Botulinum toxin (Botox), a newer and highly effective treatment, is injected directly into the affected muscles. Alcohol or phenol injections into the nerve controlling the muscle are another option. Multiple medications are available to control seizures, and athetosis can be treated using medications such as trihexyphenidyl HCl (Artane) and benztropine (Cogentin).


another very interesting site )see link below) states:

Botulinum Toxin Type – A
Prevents transmission of signals between nerve & its target muscles. It acts locally so that developing muscles can grow normally. It produces reduced stiffness, reduced contractures, less need of surgery and increased chance of normal development

http://www.udaan.org/multimode/aiimsbtx.html

[twins r fun]

Wow! You guys are amazing. Thanks for all your sweet words, prayers, thoughts, virtual hugs, offers of help, and advice. After a day to think about things and having done some research, I'm really okay with the fact that he might have CP. We already know what it is affecting and things won't get worse (unless we don't do anything to help him). It's not like it's a degenerative disease-we've got the worst of it presented to us right now so we just need to figure out the best way to help him. In actuality we feel pretty lucky that this is his only problem. If he indeed did have some brain trauma around birth, we could have been dealing with a much worse situation and a much different child.

All that said, I have two concerns left. One is that I was really hoping (when we assumed it was just a physical issue) that we would have his feet fixed up and have him walking normally and out of braces by the time he went to school. It doesn't sound like that will be the case since the doctor yesterday said he will need therapy and braces through his developmental years. So I worry about the psychological and social impacts this might have on him when he goes to school. And second, although I say we've got the worst of it presented to us right now, part of me worries that maybe there are other areas of his brain that could be affected and we won't notice until he starts school or gets older and mental issues are more obvious. That's a scary thought, but then I gues no one really knows what kind of things might pop up with a child as they develop.

Just to clarify since all the above makes it sound like we've accepted this diagnosis, we are still getting a second opinion. My doctor was supposed to get back with me today with the name of a neurologist, but doesn't have one yet. I was also unable to get ahold of our PT to see what her thoughts were on this. So overall an unproductive day! One of the reasons I really want another opinion is that I still feel there could be some impact from an injury Jacob got when he was 7 days old. He had an IV infiltrate when he was in the NICU, sending a caustic chemical solution into the tissues of his leg. It was a big chemical burn on a tiny baby (think larger than a quarter on the leg of a child weighing 4.5 lbs). It took over three months for the scab to fall off and he has a large gashlike scar from it. This is on the leg he's having all the tightness with. We've always kind of wondered if the chemical did some internal damage or if the scar tissue is causing problems. We've been trying to get someone to look into that, but so far no one has thought it was a likely scenario. Obviously a pediatric neurologist won't either, but if she tells us she too thinks it's CP then we'll drop the whole leg injury issue and move on. Otherwise we'll keep persuing it.

Thanks again for everything and I will contact some of you who have offered info or doctors if I need you. One question for right now-for Nita or anyone else who knows. When they sedate kids for an MRI, does that mean completely asleep, performed by an anesthesiologist or is it lsome medicine to relax them. I assume it's the first, but thought I would check.

[mamahill]

I'm sorry I didn't respond earlier (Ainsleigh has velcroed herself to me...), but wanted you to know that you and Jacob have been in my thoughts today. You are an incredibly positive and strong woman and I have admired you for the past year and however many months. Best wishes to all of you on your second opinion and whatever decisions regarding the future that you make. Thinking of you...

[COElizabeth]

Nicole,

I too am so impressed by your strength and positive attitude in every situation. I hope that whatever turns out to be the underlying cause of his leg difficulties, Jacob makes rapid progress in treatment and that the discomfort and psychological toll are as minimal as possible. Please keep us posted!

Elizabeth, Mom to James, 9-20-02

[dogmom]

Nicole,

You've gotten such great information from everyone. I'm sorry I'm contributing late, working nights keeps me very out of the loop.

All the diagnosis of CP says is that there is a problem with the muscle control control that traces back to the nervous system, it can exhibit in various ways. Because the parts of the brain and lower nervous system and different than the coginitive parts, it does not mean that there is involvement of any other areas. I understand your question about the IV issue. In generally, a good clinician can differentiate from nerve/central nervous system muscle problem and just a pure muscle problem by clinical exam. When/if you see the neurologist I would suggest you ask a question like, "Can you explain to me why you think it is something from his nervous system that is causing his muscle problem and not his old injury? It would be very helpful to me and my husband to understand that." He or she *should* be able to explain it to you in simple, concrete terms. It would be a good indication on how communicative a doctor they are also.

As far as I know they would heavily sedate Jacob for an MRI since they can be long, an hour or so, and he would have to hold still. There is usually a whole separate protocal for kids. I would insist it involve a anesthesiologist, in fact I think it has to.

I have had patients get botox injections for spastic muscles, and they have gotten some relief. Either way, it doesn't sound like something you have to decide right away on. So you could probably get a lot more information later to help you make a decision.

Good thoughts to you, please keep us all posted.

Jeanne
Mom to Harvey
1/16/03

[sntm]

nicole,
so sorry to hear about jacob but hope you find some answers soon. i've never used botox for spasticity but we used it pretty frequently in the kids with Hirschsprung's disease (where their rectum/colon can't relax so they can't poop) and it works really well, lasts about 3 months, sometimes 6. the only drawback is you have to do multiple injections since the area affected isn't very big. as far as the sedation -- if they choose chloral hydrate, they may not have an anesthesiologist involved. i know i'm authorized to sedate kids with that for procedures (though i never have). MRIs are noisy so they may need something stronger, but may not.
hope that helps a little. it certainly could be much worse, but i can imagine how awful it must be to hear CP just because of the connotations. jacob sounds like an awesome fun vivacious smart little boy -- cp won't change that! hugs to you all...

shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03
mama to Jack 6/6/03

[barbarhow]

Nicole-First of I am so sorry for all that you are going through. What an amazing attitude and spirit you have. I am in awe of you.
As far as the sedation goes-generally they use conscious sedation-many hospitals use chloral hydrate. It is dosed by weight and generally takes between 30 and 60 minutes to work. Often times the child may need a little extra chloral hydrate. A small percentage of children have whats called a paradoxical reaction to chloral hydrate-it will make them wired, totally hyper. This is fairly rare reaction.
Some hospitals prefer to use IV sedation-usually a short acting hypnotic medication-in the presence of an anesthesiologist.
Sometimes it will depend upon the length of the study-if the study requires several scans, or different areas to be scanned they might choose the IV sedation as they will ultimately have better control over the level of sedation and length of time the child will stay sedated. The chloral hydrate is typically a one shot deal and once they wake up from it they are up.
In my 5 years doing peds ER we sedated hundreds of kids. Not one of them suffered any ill consequences of their sedation.
HTH
Barbara-mom to Jack 3/27/03

[nitaghei]

Nicole,
It is general anesthesia, performed by an anethesiologist. They gave him something to calm him down first, while I held him, and then the anethesiologist administered the real thing. He did need an IV - which was hard, but the staff at Children's was outstanding.

As soon as he was out, we got kicked out of the room, because the doctor wants the MRI done as fast as possible. Neel came out of the anethesia fairly quickly. He was sort of dopey for part of the day, but was back to normal by that evening.

The hardest part, though, was not being able to feed him before. We were told no feeding after 5 am - the MRI was scheduled for 9 am. Which was tough for a 3 month old baby!

We got the results the same morning, and met with the ped neurosurgeon that afternoon. It was a long day, but everything got done in that one day.

HTH

Nita
mom to Neel 01/05/03
dog mom to a cocker and a PWD

[NEVE and TRISTAN]

Nicole,
You are such a fantastic mom, it shows in your response!!!
I have an idea for deaing with school age, sporting braces and the idea of "social impact and psychological"...because I think as a parent that is my biggest fear at times. I would meet with any teacher before classes start and ask if you can come in and "teach/educate" the children in the class about the situation. If you could even somehow obtain a set of braces where maybe during this time kids can try them on (I bet they will literally fight over the opportunity in all honesty) and have it low key, comfie, maybe sitting around in a circle and explain it in the best way possible I bet the children won't even notice once explained. I think back to issues like it was yesterday on situations that I saw in school and wonder if such a scenerio would have helped. My gut is strongly YES. I reember being jealous in 2nd grade of a child with a cast and crutches becasue everyone got to "sign it" and the crutches we stood in line during recess to try. We all wanted to be best friends with the kid becasue of those crutches. I wonder if even some little art work could be added tot he braces for the first few days where kids are facinated by them.

I give children credit if they are educated even slightly on something "different" that they will change their attitudes. Just a thought as I was thinking "what would I do"...
Neve
AKA "mama2be"-forgot password
and Baby Boy Tristan born @UNC
Feb 25, 2003
Brother to 3 pups "gees" and 2 kitties

[ismommy]

Hi,

When Bella had to have an MR she was given a something to drink that made her fall asleep and stay asleep for a while. She didn't have anestheslogist. She did have that done for the endosocpy and came through like a tropper.
Also I am in Northern VA if you need any help at anytime.
You are being a great mom doing all this research.

Helene
mommy to Isabella 9/19/01

[SeanaRain]

Hi there. Just wanted to put in my two cents as well.

I think you are doing a wonderful job with Jacob!

My husband's and my bestfriend has cerbral palsy. (His came from a very bad birth experience. The doc had a vacation he wanted to get to and prescribed 10x the legal dose of Pit for his mom. Then tried to cover it up. But that's another story!) Todd's CP affects mostly his legs, but partially his arms as well. He uses crutches to walk around with and has since he was very small. His CP does not affect him mentally at all. He has a BS and is considering going back to school for a Master's. He currently works in tax preperation. Quite a smart guy.

When he was in school, he would use his crutches for short trips, but for going from class to class he used a motorized scooter. I can't think of him ever telling me of a time when kids picked on him or made fun of him. (Well occassionally, but was quickly given up. There was no one who constantly picked on him though)

If you have any questions about CP you want answered, let me know and I'll happliy ask Todd for you. I don't even have to ask him to know that he'd be more than willing to help you out with them.

[nigele]

>"So I worry about the psychological and social impacts this might have on him when he goes to school."

Nicole - I have the same worries about Tom when he has to go to school wearing both a patch on his eye and his glasses (until he is 9 or 10.) A day doesn't go by that I don't feel terrible for what he may have to go through when he starts school. At the same time, I totally agree with Neve about educating the other kids. I have kids ask me all the time why Tom is wearing a patch. Once I explain it to them, they usually accept it and move on. Except for one little guy - he was about three and asked me what happened to Tom's eye. I didn't want to get into the whole story so I just said "it got hurt." The little boy looked at me, puffed up his chest and said, "well, if anybody else tries to hurt him, I'll beat them up!" It melted my heart. Anyway, people tell me all the time that having this disability will make Tom stronger, more resilient and give him character. I have to believe that and know that the same will happen for Jacob. Hang in there!

[twins r fun]

Thanks again everyone for your encouragement. We got Jacob an appointment at Kennedy Krieger (which is somehow related to Hopkins). They have a movement disorders clinic specializing in treating CP, but also use it to diagnose (but not treat) other things. They have nuerologists, physiatrists, orthopedic surgeons, PTs, etc. It sound ideal for what we need to get our second opinion. As expected, the first available appointment is March 3rd-ugh, 3 months. My pediatrician is currently working on pulling some strings to get us in with a very good pediatric nuerologist (who used to be at Kennedy Krieger). She thinks she can get us in so we'll see what happens. If nothing materializes, I'll start pulling in some favors from you guys! Updates when I have them.

[Melanie]

Lisa, that story melts my heart. It's good to hear children are different these days.

[brittone2]

Hi there,
I usually don't stop by over at this board often, but today I did. I'm actually a pediatric PT. SOrry you've been going through so much trying to find out what is going on with your DS. CP isn't always as easy as you'd think to diagnose. CP is a problem originating in the brain that can affect muscle tone (among other things) as your doc mentioned. CP can look very very different from child to child. It all depends on what area of the brain is affected as far as what you see externally, if that makes sense.
I'd definitely get a 2nd opinion, and a pediatric neurologist would be the way I'd go personally. I think getting a scan would be good too if it were my child, but that is strictly my personal opinion. I don't like giving "medical" advice online, kwim?
As far as botox, it can be quite effective, but you'll want to do your research. It depends on the child, what muscles are involved, etc...and it doesn't work the same for every child. . The shots alone aren't enough...you want to take advantage of its effects right after the shot for more aggressive stretching/splinting etc. which is why PT would be even more involved at that point. Sounds like that is what they are recommending anyway. I don't like to offer any medical advice over the computer, but I at least thought I could give you a little bit of info.
I know getting a diagnosis is a scary thing, but keep in mind your little boy is still your little boy regardless of what diagnosis he's given. You are on the right track as far as wanting a 2nd opinion and wanting to research before doing anything more drastic.

Take care,
Beth