Posted By Posting
Feb 11, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Jazzy and I are Back from the G.I
And now the GI thinks that Jazz is having abdominal migrains...Anyone else hear of this???

Because Jazz is gaining weight (even though it is small amounts) and because she complains of chest, arms, legs and eye pain and can become violent that this could be something else that we will have to add to the list of problems.

Also, we are to try Neocate infant because it is very different chemically from Neocate jr. (which Jazzy reacted too). If that doesn't work then we will try a pure amino acid combo. Also, we are to repeat the scope in about 6-8 weeks (can't believe we have to go thru that again...)

Lastly, we are starting periactin. I hope that this time we've hit the nail on the head....I'm so desperate for something to get her to a "good place" KWIM? Thanks for listening.....

Feb 11, 2009
gail
Gail - mom to a six year old with reflux and an infant with reflux
My son has migraines. He was officially diagnosed at four years of age. Up until that point, the doctor and speech therapist thought that his head banging and high-strung aggressive tendencies were due to speech delays. After starting periactin, he quit banging his head and we had fewer episodes of aggression. I hope that you see a big difference with the periactin....we did after a couple of weeks. I just felt so guilty that he went around with a bruise on his forehead for such a long time prior to figuring out exactly what was wrong. We still have a couple of headaches a month but for the most part they are not life-altering events. In addition to the periactin, it helps my little guy to go to sleep and wake up at the same time each day.
Feb 11, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
Sorry don't have much time but this was one of the things i really think emily might have here is some info:
http://www.reflux.org/reflux/webdsc01.nsf/vwID/VASV-7KF2TX?OpenDocument

http://www.articles.complexchild.com/00031.html
Feb 12, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Thanks all. Kat, my dr has told me that she has several under 3 yrs old with abdom. migraines who respond well to periactin, just to reply to your post re: abdo.migraines with Emily.

Gail, I might ask you more questions when I have a moments peace!!!

Feb 12, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
it's something we are going to explore with Z...he may have them, too!
Feb 12, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
can I send you these two cans of Neocate I have? I can't beleive I can't give them away!! I've posted on three different websites!
Feb 12, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
I hope the periactin helps! If not, there are stronger medications like Elavil(amitriptyline). Do you have family history of migraine?Usually, there is history of it, but not always.
Feb 12, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Zack's mom that would be great!!!!

JessicaLynn I sometimes but very rarely get migraines. I hope this works though. has Brent used any of those meds? Has this been an issue for you guys too?

Feb 12, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

I am familiar with abdominal migraines because I have read about it a lot, and there are right many kids on another board I post on that have it.

Brent is not diagnosed with abdominal migraines, he is diagnosed with visceral hyperalgesia,a pain disorder, in his case resulting from his motility disorder,nerve damage,etc. Elavil,Lyrica,Neurontin, can all be used as treatment. He takes high dose Neurontin daily, a chronic pain medicine to treat neuropathic(nerve related) pain, it also can be used to treat migraines and seizures. Neurontin has helped him a lot,he also takes zofran(odansetron) daily.

Visceral Hyperalgesia, which may also be called Visceral Hypersensitivity, is a term that simply means an individual has increased sensitivity to pain in the visceral system of internal organs like the stomach, intestines, or pancreas. Normally, when one eats or drinks, the stomach and intestines stretch to accommodate the meal with no discomfort whatsoever. But in a child with Visceral Hyperalgesia, the mere act of filling the stomach or intestine with a small amount of fluid or food triggers the nerves in the gut to respond as if a painful stimulus has been introduced.

If motor nerves are affected, a motility disorder develops, and when sensory nerves are affected, Visceral Hyperalgesia is often the result. It is common for both types of disorders to be present in tandem.

What is painless to most children feels excruciatingly painful to children with Visceral Hyperalgesia. Children with this diagnosis commonly have pain responses to one or more types of agents: pain due to digestive processes such as food entering the gut or liquid stretching the gut; significantly increased pain due to infections, viruses, or other external insults on the gut; and a pain response to psychological events such as anxiety or fear. In many children, all that is needed to cause pain is the introduction of food into the stomach and intestine. Once the pain signal has been turned on, the pain may persist for weeks, months, or years, or may come in intermittent cycles.

What causes Visceral Hyperalgesia? In many cases, it occurs after a virus, illness, or other external assault on the gut. The illness causes temporary damage to the mucus lining of the stomach and intestines, resulting in stomach pain. This pain then sensitizes the nerves in the stomach and/or intestines, causing them to be left "turned on" and hypersensitive to pain. Other gastrointestinal conditions such as pancreatitis, motility disorders, cyclic vomiting ,abdominal migraine, or even severe reflux may also trigger Visceral Hyperalgesia. In some children, only one small area of the digestive tract is affected, while in others, most or all of the gut is impacted.

Symptoms of Visceral Hyperalgesia are vague and often very difficult to categorize. All diagnosed children experience pain, but the pain may be localized, diffuse, sharp, dull, burning, intermittent, or constant. Many children with severe Visceral Hyperalgesia also have other symptoms such as bloating, constipation, diarrhea, retching, or vomiting. This is especially the case when both the sensory and motor nerves of the gut are affected. In many children, pain triggers gastrointestinal symptoms like retching and vomiting, which in turn create even more pain and distress. These additional symptoms, coupled with pain, may be so severe that a feeding tube or even a central line must be placed for enteral or intravenous feedings.

Many children with Visceral Hyperalgesia, especially post-infectious hypersensitivity, will recover in time with no treatment. Other children, especially those with underlying gut issues like pancreatitis or a motility disorder, may require substantial intervention to provide adequate nutrition and manage pain and additional gastrointestinal symptoms.

Children with acute-onset Visceral Hyperalgesia may benefit from typical acute pain medications ranging from Motrin to Morphine. In general, children who need acute pain relief are given non-narcotic pain relievers such as Tylenol or Motrin, or pseudo-opiates like Tramadol, since narcotics and opiates disturb motility of the gut and may worsen gut function in the long run. Once Visceral Hyperalgesia has become more habitual, other pain medications may be more appropriate. Commonly used medications include tricyclic antidepressants, especially Amitriptyline (Elavil), Nortriptyline (Pamelor), and Imipramine (Tofranil). Medications to treat neuropathic pain have also proven helpful, especially Gabapentin (Neurontin) and its new cousin Pregabalin (Lyrica). Other possible medications include Nifedipine (Procardia); Dicyclomine (Bentyl), Alosetron (Lotronex) or Tegaserod (Zelnorm) for children with more intestinal issues; Ondansetron (Zofran) to prevent vomiting; Hyoscyamine (Levsin) for children with spasms; and other anticholinergic and anti-nausea medications. Older children, particularly those with concurrent psychological disorders, may benefit from behavioral therapy or consultation with a chronic pain psychologist. Some children may also improve by receiving continuous small feeds through a feeding tube, particularly feedings directly into the jejunum via a GJ or J tube. Children with extremely severe Visceral Hyperalgesia may need a central line and TPN (IV) feedings to allow total gut rest.

Brent took periactin as an infant, and it didnt help him at all(he took it for appetite stimulant), but I know of many others whom it has helped a lot

Feb 12, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Thanks Jessicalynn for the info. I have often thought that Jazzy suffers from some sort of hypersensitivity to pain, as she seems to always be complaining of sharp limb, stomach, head or eye pain, for no apparent reason. Most of her Dr. don't know what to make of this. Actually, I can hear her complaining to DH as we speak about sudden eye pain :-(. Since her pain is so diffuse and she is still unable to fully express herself, we are struggling to find a solution. Thanks again, I will look into this a bit more.
Check with your
doctor first!