Does this sound like ICP?

[nancy]

My almost three month old baby has been "fussy" since birth. Right away I noticed that when I pick him up from a supine position, he screams. Messing with the back of his neck makes him scream. I thought this must be from the birth, but now I wonder. He also arches his back and neck while he is screaming. He wrythes around a lot and "climbs" up and claws at our chests when he is held. He seems like he is trying to climb out of his body. He is comfortable when his head is hanging down to his chest. He has reflux, but so do a lot of babies.... He also chokes during almost every feeding. I am trying to switch him to formula temporarily to see if that works, but I don't think gas is the problem. Or maybe it is, who knows... My cranio three year old also choked and gagged while nursing and couldn't swallow solids until after his second birthday. He still chokes on liquids. His operative skull showed signs of pressure wear. My baby will cry and scream for no apparent reason. He also breaks out in a cold sweat during these episodes. Maybe he is just colicky on top of cranio? Every time he wakes up he is crying pitifully. I think that I need to come up with the answers myself. The nuero doc here is unconcerned, just as he was/is with my three year old. He doesn't recommend surgery right now for baby's cranio b/c his head still looks OK. THat's fine with me, but what about pressure? Although the back of his head is sticking out so much that his head has to turn to the side when he is laying on his back. I think I am dealing with pressure for both my kids, but I don't know where to go for help. The pediatrician has no answers. My three year old has been waking up with his hands and feet numb. He also seems generally agitated, mostly refuses to eat and so is anemic and nutritionally deficient. Hopfully someone has been here before.

[Lisa]

Have you contacted Dr. Fearon about your concerns with both of your children? I think given all they both have going on, I would want them looked at by an expert that knows how to determine ICP, and to see if anything serious such as that is going on.

[nancy]

That' s the problem. Dr. Fearon is great, but he's a plastics guy, he's not a nuerologist, as my husband points out. Did your son display any of these symptoms?

[dannlark]

I would definatley call Dr. Fearons office and see if you can speak with him directly. He knows his stuff, even about ICP, and maybe he could get you in with both your kids and you could meet with Dr. Sacco or another NS Dr. F uses. I wouldn't wait if you have this gut feeling that something isn't right. As far as the reflux/asperating thing goes, it seems to be pretty common in our cranio kids. Ian had HORRIBLE reflux and asperated all the time. VERY scary!!! He also couldn't handle solids. I didn't feed him solids until he was about 10ish months old. Put in the call!!!!!

[Lisa]

That' s the problem. Dr. Fearon is great, but he's a plastics guy, he's not a nuerologist, as my husband points out. Did your son display any of these symptoms?

Our craniofacial surgeon is the one who detected my son's ICP with a CT scan. Dr. Fearon I am sure is very knowledgeable about the signs of ICP and how to detect it because it often accompanies cranio fusions.

My son displayed the inconsoleable crying, and it really sounds like your son has the same issues. His head was so sensitive. What makes ICP so hard is that normal things that soothe a baby, rocking, bouncing, swinging causes ICP babies more pain. Imagine having a migraine headache and somebody rocking or bouncing you, it would be very painful!

Our surgeon was able to see on the CT scan that parts of his skull were thinning due to the pressure and his brain was literally punching holes in his skull.

I would contact Dr. F immediately. Like Larkin said he will be able to work with his NS and get you the best care.

[Christina's_Mommy]

I agree with the others. I can tell you from first hand experience that Dr. Fearon knows about ICP and others. He's not a neurologist however, he does know his stuff. If he's not sure he will find out. Hang in there momma. Let us know what you find out!

[*jules*]

oh my, so sorry you're dealing with all this. I have no ICP experience, but also think you need to contact someone immediately. of course dr. fearon was our surgeon, so I'll always recommend him...he's wonderful! best wishes and keep us posted :)

[angeleka]

I don't know about what your 3 year old is going through, but most of what you are describing with your baby seem a lot like what I went through with my son and his extreme reflux issues.
I notice that your baby has 2 sutures closed. Even though the metopic is mild, I would be severely concerned that they have not recommended surgery and that the neuro is "unconcerned" as you put it. I would be searching out a second opinion quickly. I would not settle for his opinion since he was/is also unconcerned with your other child's issues. It really sounds like he wants the head to look extremely deformed before addressing any issues and there can be issues even with a mild case in some instances.
I have a couple of questions. Has your child had an eye test to check for ICP? This is not a perfect way to get an answer, but it is a start and should be done.
Have you seen a craniofacial plastic surgeon with this child to discuss the case at all or just a NS?
Have you had an upper GI done to confirm reflux?
What meds is he on for reflux? Have you tried others? I had to go through several different meds before we found one that worked for Andrew. It took forever and I thought he would never be out of pain. Some of the meds have inactive ingredients in them that can actually make the babies worse. My soon reacted terribly to Xantac and Prevacid. They made him worse instead of better. When I was BFing I had to go off of dairy (which did not work), then tried hypoallergenic formulas, and soy formulas. Nothing helped until we found the right meds. In the end we had to give Prilosec and Mylanta Supreme together. It took almost 7 months to get it right and then at 9 months, when the little stomach flap is supposed to mature, it all stopped like a miracle. One day he started having negative reactions to the meds that worked for so long. I took him off the meds and he was all better.
Not saying this is not ICP, just that it could be terrible reflux or ICP and the only way to really know is to follow up with both. Push to get answers for both and don't stop until you find docs that listen to your every concern.... and show concern for it all. Any Dr that does not show concern when you say these things about a baby who has two sutures closed needs to have his license pulled IMO. Doesn't matter if one is mild or not. Closed or closing. Partial or full. 2 is two many things happening at once for such a young boy.

[evergreenmom]

Dr Fearon works with wonderful Neurosurgeons who really know their stuff. We used Dr Sacco and he is fantastic!! These two wonderful docs diagnosed my sons chiari when the two surgeons we met locally weren't even bothering to look for it! The doctor you have been dealing with sounds clueless- call and set up a phone consult with Dr F or email him...I am sure he can help. Or take Navid to an experienced CFS locally and get their opinion. I don't think I have heard of not operating on a child with multiple sutures before. Neurologists do not specialize in cranio- CFS's working in conjunction with Pediatric Neurosurgeons do.

My son was very fussy and had horrific spitting up episodes as an infant. He didn't sleep well day or night and he had a "copper beaten" appearance to his skull as seen on Ct scan. We had a pediatric opthalmologist check him for ICP which I know ( from numerous sources and reading articles) can be a good indicator of pressure. She never saw any papil edema (swelling) so our hope was that he was not experiencing any ICP however in retrospect I know that his symptoms completely subsided post surgically. Therefore while I think the pressure in his skull may not have been severe- I definitely think it was making him uncomfortable and causing him difficulties... possibly even developmental delays. He just turned two but in speech he is at the level my daughter was at when she was between 12 and 15 months of age.

I am no doctor, but my guess is that if your son has a closed metopic and saggital that there may be some pressure inside his skull and I think your only reasonable option at this point is to get him to a specialist in the field of craniosynostosis who can help you determine the next step.

Best wishes and please keep us posted- we really do want to help!

[Nezzy]

Forgive me, but I see that you went to Dr. Fearon for your first son's surgery. Why are you not contacting him now? The physician you are dealing with is obviously not taking this seriously. I would get in touch with Dr. Fearon ASAP.

[Momof2Boys]

My son was fussy since birth, the ped. doctors told me it was colic which I do not believe. Justin would not nap more than 20 minutes and would not sleep through the night. He would scream at night and in the car and nothing would calm him down. They put him on reflex meds until he was two years old until I saw a second gastro specialist and after an endoscope and ph probe showed no signs of reflux. I think before surgery he was having ICP since the bones in his skull where so thin from his brain trying to grow. None of the doctors would admit this. I would get a second opinion or contact Dr. F. I noticed you are in Gainesville, I live in Orlando area and would recommend the NS office we see. They have been highly recommended by other pediatricans and a few friends.

[*jules*]

Forgive me, but I see that you went to Dr. Fearon for your first son's surgery. Why are you not contacting him now? The physician you are dealing with is obviously not taking this seriously. I would get in touch with Dr. Fearon ASAP.

DITTO.

I missed that you're already a dr. f patient before :o

[nancy]

WOW!! You all really inspired my husband! I showed him this thread and this morning he contacted a pediatric nuero-radiologist in Jacksonville who will help us cater the MRI's to look for pressure. My husband went through medical school here and can get people's attention better than I can. i think he needed to hear you all confirming our experience to light a fire under his seat. Our pediatrician stepped up and sent a referal to Dr Ruiz in Orlando- I think somone mentioned him.We will also see Dr. Fearon in May. Thank you all so much!

[nancy]

I want to add that we are still Dr. Fearon fans all the way! He just doesn't offer craniectomies, and I am trying to preserve as many sutures as we can this second time around, since Noah still clearly has pressure issues. We may end up going to him anyway, but are looking at all our options.

[Momof2Boys]

I forgot to ask on the pm, is Dr. Ruiz a neurosurgeon or neurologist?
I am glad your husband is helping in getting the ball rolling. When you feel that something is wrong with your child, you should always follow that feeling. Some doctors can try to make you feel like you are just crazy but only you know your child.

[evergreenmom]

Nancy-

I am so glad your husband is helping you and that you are moving forward and figuring out your options- it will feel so much better when you know you are doing something other than worrying all the time!! I don't know surgeons in your area, but if you are looking for an endoscopic procedure for Navid you should start a thread and I am sure the endo Momma's will chime in. Best wishes and keep us posted- we are here to support you through this.

[Perla]

Hi Nancy,
I just wanted to say hello.
I am sorry Navid was also diagnosed with cranio.

Hopefully you will get all the answers you are looking for, regarding ICP
All the best,

[craniomommynbaby]

Jamie, I found this on a website. He is the craniofacial surgeon that Dr. Ricalde referred us to since she does not travel to Orlando now.

Dr. Ruiz serves as the Director of Pediatric Craniomaxillofacial Surgery and the Craniofacial Disorders Program at the Arnold Palmer Hospital for Children.

[Momof2Boys]

Thanks Cindy, now that I think we did meet him after Justin's surgery. I talked to Amy today and they used Dr. Ruiz for their son.