Chiari Malformation and PANDAS overlap questions.

[Stephanie2]

OK, so my son's hernia surgery did not work out b/c at the last minute it was brought to the attention of the anesthesiologist that my son has Chiari so she refused to operate on him at the outpatient unit of the hospital, at a hospital that doesn't have a level 3 neonatal unit nonetheless. I was disappointed but then I though "duh", why didn't I think of that, and more importantly, why didn't the surgeon think of that at the pre-op appt!!?? I had to arrange for care for my other child, my husband had to take the day off, my son had to fast and skip meds, etc... He was in his surgical gown for gosh sakes!!

 

Anyway, so we decided to go to a surgeon in Miami (there comes a time when you decide that the local docs just don't know how to handle your kids and that time has come for me...can't even get a good blood draw around here!). I am trying to arrange for my son to have the hernia surgery back to back with an extensive MRI (since he always wakes up with the chloral hydrate) under gen anes.

 

Pediatrician (who happens to have chiari, went years undiagnosed, developed syrinx, had decompression surgery - most invasive of the three) wants us to bring him to a neurosurgeon in Chicago who specializes in chiari surgery and she thinks i should consult wih Dr. K while I am up there to see if he has any feedback about the overlap of pandas and chiari. I would think the only way he would know anything about the two is if he has had several patients who had both. maybe i will email him.

 

In the meantime I have an appt with Scott Smith next week and I will "pick his brain" (no pun intended) about what he thinks (he says he has a handful of chiari kids, maybe some of them have pandas too).

 

BTW, the ped wants me to have a video swallow study done with a speech pathologist to see what is going on with the feeding issue. Can anyone give me some details about this study? She said they have the child swallow different textures, etc. Well if he is refusing to eat how will they do that?

 

I am one busy mommy now...

 

I thought that I would always avoid this surgery at all costs, but to see my son suffer every day these days - it really is getting to me and I think that if it were me I would have the surgery done right away...i am not one to enjoy chronic pain. But I am so scared for his little life and for complications that could ensue...

 

Thank you so much for all of your replies and I am going to have my husband read all of these posts.

[Stephanie2]

not sure if this can be of help to you Stephanie, as it doesnt involve the PANDAS aspect, but there is a lot of archived Chiari info at NeuroTalk

 

Thank you Cheri, I just joined that forum (yay, another way to kill time I don't have!!). With both boys having pandas i just haven't had time to do the chiari research, guess I gotta get on the ball...

[sptcmom]

OK, so my son's hernia surgery did not work out b/c at the last minute it was brought to the attention of the anesthesiologist that my son has Chiari so she refused to operate on him at the outpatient unit of the hospital, at a hospital that doesn't have a level 3 neonatal unit nonetheless. I was disappointed but then I though "duh", why didn't I think of that, and more importantly, why didn't the surgeon think of that at the pre-op appt!!?? I had to arrange for care for my other child, my husband had to take the day off, my son had to fast and skip meds, etc... He was in his surgical gown for gosh sakes!!

 

Anyway, so we decided to go to a surgeon in Miami (there comes a time when you decide that the local docs just don't know how to handle your kids and that time has come for me...can't even get a good blood draw around here!). I am trying to arrange for my son to have the hernia surgery back to back with an extensive MRI (since he always wakes up with the chloral hydrate) under gen anes.

 

Pediatrician (who happens to have chiari, went years undiagnosed, developed syrinx, had decompression surgery - most invasive of the three) wants us to bring him to a neurosurgeon in Chicago who specializes in chiari surgery and she thinks i should consult wih Dr. K while I am up there to see if he has any feedback about the overlap of pandas and chiari. I would think the only way he would know anything about the two is if he has had several patients who had both. maybe i will email him.

 

In the meantime I have an appt with Scott Smith next week and I will "pick his brain" (no pun intended) about what he thinks (he says he has a handful of chiari kids, maybe some of them have pandas too).

 

BTW, the ped wants me to have a video swallow study done with a speech pathologist to see what is going on with the feeding issue. Can anyone give me some details about this study? She said they have the child swallow different textures, etc. Well if he is refusing to eat how will they do that?

 

I am one busy mommy now...

 

I thought that I would always avoid this surgery at all costs, but to see my son suffer every day these days - it really is getting to me and I think that if it were me I would have the surgery done right away...i am not one to enjoy chronic pain. But I am so scared for his little life and for complications that could ensue...

 

Thank you so much for all of your replies and I am going to have my husband read all of these posts.

Hi

M SLP uses this for parent info before we do a video swallow maybe it helps or since you're so well read and so well researched you may already have seen this. We use a syringe/dropper to push food in to the back of the mouth or try positions and other tricks. Some work, some don't. The barium is the tricky part.

 

http://www.chkd.org/documents/radiology/VideoSwallow.pdf

 

Jodie

[kimballot]

BTW, the ped wants me to have a video swallow study done with a speech pathologist to see what is going on with the feeding issue. Can anyone give me some details about this study? She said they have the child swallow different textures, etc. Well if he is refusing to eat how will they do that?

 

I am one busy mommy now...

 

I thought that I would always avoid this surgery at all costs, but to see my son suffer every day these days - it really is getting to me and I think that if it were me I would have the surgery done right away...i am not one to enjoy chronic pain. But I am so scared for his little life and for complications that could ensue...

 

Thank you so much for all of your replies and I am going to have my husband read all of these posts.

 

You mentioned that your son is eating baby food. They should be able to put barium into whatever food he typically eats. Check ahead of time and bring the foods with you. They also will likely try to get him to eat some other textures. Some kids have problems swallowing specific textures and that is the source of refusal (as opposed to a sensory preference). For example, drier foods may be harder to swallow. Also, if he is having any trouble with tongue movements or cheek muscles it can make it hard to chew food. The speech therapist will probably check his oral motor movements as well as his swallowing.

 

There are lots of videoflouroscopy studies posted on line if you google it. Some are "normal" results and some are problematic. You may (or may not) want to look at some of these before you go!

[Stephanie2]

OK, so my son's hernia surgery did not work out b/c at the last minute it was brought to the attention of the anesthesiologist that my son has Chiari so she refused to operate on him at the outpatient unit of the hospital, at a hospital that doesn't have a level 3 neonatal unit nonetheless. I was disappointed but then I though "duh", why didn't I think of that, and more importantly, why didn't the surgeon think of that at the pre-op appt!!?? I had to arrange for care for my other child, my husband had to take the day off, my son had to fast and skip meds, etc... He was in his surgical gown for gosh sakes!!

 

Anyway, so we decided to go to a surgeon in Miami (there comes a time when you decide that the local docs just don't know how to handle your kids and that time has come for me...can't even get a good blood draw around here!). I am trying to arrange for my son to have the hernia surgery back to back with an extensive MRI (since he always wakes up with the chloral hydrate) under gen anes.

 

Pediatrician (who happens to have chiari, went years undiagnosed, developed syrinx, had decompression surgery - most invasive of the three) wants us to bring him to a neurosurgeon in Chicago who specializes in chiari surgery and she thinks i should consult wih Dr. K while I am up there to see if he has any feedback about the overlap of pandas and chiari. I would think the only way he would know anything about the two is if he has had several patients who had both. maybe i will email him.

 

In the meantime I have an appt with Scott Smith next week and I will "pick his brain" (no pun intended) about what he thinks (he says he has a handful of chiari kids, maybe some of them have pandas too).

 

BTW, the ped wants me to have a video swallow study done with a speech pathologist to see what is going on with the feeding issue. Can anyone give me some details about this study? She said they have the child swallow different textures, etc. Well if he is refusing to eat how will they do that?

 

I am one busy mommy now...

 

I thought that I would always avoid this surgery at all costs, but to see my son suffer every day these days - it really is getting to me and I think that if it were me I would have the surgery done right away...i am not one to enjoy chronic pain. But I am so scared for his little life and for complications that could ensue...

 

Thank you so much for all of your replies and I am going to have my husband read all of these posts.

Hi

M SLP uses this for parent info before we do a video swallow maybe it helps or since you're so well read and so well researched you may already have seen this. We use a syringe/dropper to push food in to the back of the mouth or try positions and other tricks. Some work, some don't. The barium is the tricky part.

 

http://www.chkd.org/documents/radiology/VideoSwallow.pdf

 

Jodie

 

Jodie, thanks for passing this along - very helpful to know what to expect. Luckily he takes many supplements/meds each day via syringe (some which are downright nasty!), so he shouldn't really have a hard time with the barium.