From: Lisa Higgins <lnhiggins@...>
Subject: Re: [Mito] Inconsolable spells of crying/pain
To: Mito@yahoogroups.com
Date: Monday, July 6, 2009, 4:10 PM

My daughter has gone through multiple periods of the same thing.  It is sooo frustrating when they cannot tell you what is wrong!  Here are a couple things that we figured out with Ainsley - not sure they will help, but I hope something will bring him (and you) relief soon:

- We figured out she was having lots of headaches.  Come to find out from a pain management specialist that treated multiple mito kids that headaches are common issues with mito kids, especially those with neurological or GI issues.  He ended up putting her on a low dose patch that actually was for lowering blood pressure, but for some reason, it worked and almost overnight the fussing/crying/ inconsolable periods stopped.  We try ibuprofen now, but if it goes on for multiple days, we put a patch on her for several weeks to get through the worse parts.

- She was having terrible gas at one point.  We ended up giving her glycerin suppositories just to make her pass the gas!  We also added those no-gas baby drops several times a day - both of which helped.  She has gut dysmotility and sometimes the gas just gets stuck in there and she cannot pass it without help.

- I also agree with what several others wrote on here - sometimes it is just overtired or "mito tired" - you would not think thats it bc they fight sleeping, but with lots of sensory pressure (we have a weighted blanket that we use at times), we can get her to calm down long enough to take a nap.

- We also have heat intolerance and sometimes even though we are in the A/C and haven't spent much, if any, time in the heat, its just not cool enough for her.  We usually crank down the air and put her in front of a fan, and sometimes taht will work too.

I know its frustrating, and believe me, there were sooo many days when I didn't know what was wrong!  When she was a baby she would cry for hours.... figured out that she was having some seizures that we didn't see and they were scaring her... she also had reflux that we didn't get diagnosed until she was almost 1 year old, and after some reflux meds, it also seemed to help.

Please feel free to vent on here and email me on or off list if you have any questions... Ainsley is 4 and until about the last 4 months or so, we would go through crying periods like you are describing at least every month if not more often!

Lisa

mom to Ainsley

On Jul 6, 2009, at 6:23 AM, browning.stacey wrote:

My 2 yr old son is very fussy. Of late, he is inconsolable for a couple hours straight ever afternoon. It can happen at other times too. It's reminicent of my older son's early colic. At first we thought it due to heat as he doesn't regulate his temperature well, but we've moved his crib and have had low temperatures outside lately and still the crying. Admittedly nonverbal, he's always cried/held his breath when eliminating or hungry. But as soon as those things were remedied, he'd be fine. Now he can eat between cries or poop, then continue with his crying. Tylenol/Motrin hasn't worked.

We are at our wits' end. Our nerves are fried. When I ask Docs what to do (GI, ENT the latest seen - in fact he cried through his entire ENT appt and the doc seemed unfazed), they seem to say that fussiness is typical with neurological disorders (probable mito complex 1). Anyone had this or can offer some help?

From: Khawlah Barley <bkhawlah@...>
Subject: Re: [Mito] Inconsolable spells of crying/pain
To: Mito@yahoogroups.com
Date: Monday, July 6, 2009, 1:59 PM

My son had LOTS of these periods during the first 18 months. I used to drive him around in the car and he woudl still cry--for hours. He always did this much more during a 'down phase'. It sort of stopped happening until recently my son's diagnosis was questioned by some 'experts'. His nuero and I decided to try him off his cocktail and take down his high levels of pedilyte to see if it would have any effect (if no mito there should be no effect was the thinking). Crying spells came back right away but gotbetter right away when I put up his pedilyte levels but still without the mito cocktail. Our neuro has mentioned muscle pain as a possiblity b/c my son often will take my hand and hit himslef in the thigh muscle to sleep, my son is also less stable when his fluid levels are at a 'normal' level. He also mentioned to me headaches my be an issue and the fluids might help with this as well since my son does tend to get dehydrated on 'normal' fluids levels. Now that he is back on his coctail and has his pedilyte his sleep is fine and his crying spells are pretty typical for a 2 year old. I don't know if our experience will be of any help. I do understand how hard it is, especially when they can't tell us what is wrong--sometimes I have just longed for him to be able to tell me what hurts so I can try to fix it for him. Take care. From: Lisa Higgins <lnhiggins@gmail. com> Subject: Re: [Mito] Inconsolable spells of crying/pain To: Mito@yahoogroups. com Date: Monday, July 6, 2009, 4:10 PM My daughter has gone through multiple periods of the same thing.  It is sooo frustrating when they cannot tell you what is wrong!  Here are a couple things that we figured out with Ainsley - not sure they will help, but I hope something will bring him (and you) relief soon: - We figured out she was having lots of headaches.  Come to find out from a pain management specialist that treated multiple mito kids that headaches are common issues with mito kids, especially those with neurological or GI issues.  He ended up putting her on a low dose patch that actually was for lowering blood pressure, but for some reason, it worked and almost overnight the fussing/crying/ inconsolable periods stopped.  We try ibuprofen now, but if it goes on for multiple days, we put a patch on her for several weeks to get through the worse parts. - She was having terrible gas at one point.  We ended up giving her glycerin suppositories just to make her pass the gas!  We also added those no-gas baby drops several times a day - both of which helped.  She has gut dysmotility and sometimes the gas just gets stuck in there and she cannot pass it without help. - I also agree with what several others wrote on here - sometimes it is just overtired or "mito tired" - you would not think thats it bc they fight sleeping, but with lots of sensory pressure (we have a weighted blanket that we use at times), we can get her to calm down long enough to take a nap. - We also have heat intolerance and sometimes even though we are in the A/C and haven't spent much, if any, time in the heat, its just not cool enough for her.  We usually crank down the air and put her in front of a fan, and sometimes taht will work too. I know its frustrating, and believe me, there were sooo many days when I didn't know what was wrong!  When she was a baby she would cry for hours.... figured out that she was having some seizures that we didn't see and they were scaring her... she also had reflux that we didn't get diagnosed until she was almost 1 year old, and after some reflux meds, it also seemed to help. Please feel free to vent on here and email me on or off list if you have any questions... Ainsley is 4 and until about the last 4 months or so, we would go through crying periods like you are describing at least every month if not more often! Lisa mom to Ainsley On Jul 6, 2009, at 6:23 AM, browning.stacey wrote: My 2 yr old son is very fussy. Of late, he is inconsolable for a couple hours straight ever afternoon. It can happen at other times too. It's reminicent of my older son's early colic. At first we thought it due to heat as he doesn't regulate his temperature well, but we've moved his crib and have had low temperatures outside lately and still the crying. Admittedly nonverbal, he's always cried/held his breath when eliminating or hungry. But as soon as those things were remedied, he'd be fine. Now he can eat between cries or poop, then continue with his crying. Tylenol/Motrin hasn't worked. We are at our wits' end. Our nerves are fried. When I ask Docs what to do (GI, ENT the latest seen - in fact he cried through his entire ENT appt and the doc seemed unfazed), they seem to say that fussiness is typical with neurological disorders (probable mito complex 1). Anyone had this or can offer some help?

From: amandaandjackson@... <amandaandjackson@...>
Subject: Re: [Mito] Inconsolable spells of crying/pain
To: Mito@yahoogroups.com
Date: Monday, July 6, 2009, 9:39 PM

In my experience long term crying not relieved by Tylenol or Motrin is almost always belly pain or some other GI related issues... I have been through this  and my best friend whose son is severely delayed with neurological issues went through this in the most severe  way ( he cried for almost a year) and was told consistently that it was "common" for kids with nuero issues to cry and all the Dr's offered her son was more med's that would sedate him.... what worked for her and her son was the SCD diet I am not saying its for everyone and in fact my son is not on it because we resolved his crying however  your sons crying and other issues reminded me so much of my friends son I thought it was worth mentioning.. .. I hope this helps if you'd like any more info email me on or off list

 

Amanda mom to Jackson

 

In a message dated 7/6/2009 6:24:24 A.M. Eastern Daylight Time, sbrowning@paycor. com writes:

My 2 yr old son is very fussy. Of late, he is inconsolable for a couple hours straight ever afternoon. It can happen at other times too. It's reminicent of my older son's early colic. At first we thought it due to heat as he doesn't regulate his temperature well, but we've moved his crib and have had low temperatures outside lately and still the crying. Admittedly nonverbal, he's always cried/held his breath when eliminating or hungry. But as soon as those things were remedied, he'd be fine. Now he can eat between cries or poop, then continue with his crying. Tylenol/Motrin hasn't worked.

We are at our wits' end. Our nerves are fried. When I ask Docs what to do (GI, ENT the latest seen - in fact he cried through his entire ENT appt and the doc seemed unfazed), they seem to say that fussiness is typical with neurological disorders (probable mito complex 1). Anyone had this or can offer some help?

---

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From: amandaandjackson@... <amandaandjackson@...>
Subject: Re: [Mito] Inconsolable spells of crying/pain
To: Mito@yahoogroups.com
Date: Tuesday, July 7, 2009, 7:43 PM

SCD is the specific carbohydrate diet it is based on the ideas of an over growth of yeast in the system as well as a persons inability to tolerate specific foods, it is a very healthy diet it does eliminate almost all sugars and carbs but has many recipes that you can make substitions. ... you can find it online I saw another Mom post a link today...

 

Amanda

 

In a message dated 7/6/2009 6:47:33 P.M. Eastern Daylight Time, bkhawlah@yahoo. com writes:

My neuro also advised me against letting anybody put my son on anything for sleep or crying. He also felt getting to 'the issue' was better and I agree. --what is the SCD diet if I can ask? --- On Mon, 7/6/09, amandaandjackson@ aol.com <amandaandjackson@ aol.com> wrote: From: amandaandjackson@ aol.com <amandaandjackson@ aol.com> Subject: Re: [Mito] Inconsolable spells of crying/pain To: Mito@yahoogroups. com Date: Monday, July 6, 2009, 9:39 PM In my experience long term crying not relieved by Tylenol or Motrin is almost always belly pain or some other GI related issues... I have been through this  and my best friend whose son is severely delayed with neurological issues went through this in the most severe  way ( he cried for almost a year) and was told consistently that it was "common" for kids with nuero issues to cry and all the Dr's offered her son was more med's that would sedate him.... what worked for her and her son was the SCD diet I am not saying its for everyone and in fact my son is not on it because we resolved his crying however  your sons crying and other issues reminded me so much of my friends son I thought it was worth mentioning.. .. I hope this helps if you'd like any more info email me on or off list   Amanda mom to Jackson   In a message dated 7/6/2009 6:24:24 A.M. Eastern Daylight Time, sbrowning@paycor. com writes: My 2 yr old son is very fussy. Of late, he is inconsolable for a couple hours straight ever afternoon. It can happen at other times too. It's reminicent of my older son's early colic. At first we thought it due to heat as he doesn't regulate his temperature well, but we've moved his crib and have had low temperatures outside lately and still the crying. Admittedly nonverbal, he's always cried/held his breath when eliminating or hungry. But as soon as those things were remedied, he'd be fine. Now he can eat between cries or poop, then continue with his crying. Tylenol/Motrin hasn't worked. We are at our wits' end. Our nerves are fried. When I ask Docs what to do (GI, ENT the latest seen - in fact he cried through his entire ENT appt and the doc seemed unfazed), they seem to say that fussiness is typical with neurological disorders (probable mito complex 1). Anyone had this or can offer some help? Looking for love this summer? Find it now on AOL Personals.

---

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