PH probe

[Anonymous]

Hello everyone! I am new to this forum and very excited to be here. I have one quick question to get started. My son had a PH probe and Impedance Study. The results my Dr. gave me over the phone indicated a PH from 3.0 to 6.9..At the hospital the monitor always read 4.8 to 8.8! Is what the PH on the display inaccurate? I am confused.
Thank you!

[Anonymous]

My daughter had a ph probe when she was about 8 months old. I would look at the monitor and could see that sometimes it would be dropping into acid levels—but i thought she had a pretty good day and she didn’t even seem to flinch when the monitor showed she was refluxing. we later learned from her scope that her esophagus was getting ulcerated—so those refluxes had to hurt. The doctor did comment to me later that that was all she had ever known—so maybe since she had been in pain from the time she was born, she didn’t recognize pain like some of us would—I don’t know, just putting out a guess there. Anyway, if that is the only info your doc gave you about your son’s probe—go over to his office and hit him.

The range of his ph levels is pretty insignificant. what you really need to know is how many episodes of reflux he had during the 24 hour period of the probe, and especially how many prolonged episodes he had. prolonged episodes of reflux are much more significant in determining how bad their reflux is than shorter episodes of reflux. You also need to know what percentage of time your son was refluxing. Your doctor should have given you all of that information when he called you—because those are the things that tell you more—a range of ph levels really doesn’t tell you alot. I doubt that what you saw on the monitor is inaccurate—you just can’t watch the monitor all the time–and some of the rises and dips happen so quickly, you might not even notice them.

Ask your doctor for a copy of the report on the ph probe. also, ask for a copy of the graph of his ph probe—you have to be REALLY SPECIFIC about this one. I asked for a copy of the graph and just ended up with another copy of the report of sylvia’s ph probe. I had to specify that I wanted the graph—the actual visual report of the ph probe that shows a continuous line that dips up and down for the whole 24 hours of the probe. It will actually let you see what his acid levels were doing—you know how they say a picture is worth a thousand words….besides, it is really interesting to look at. I didn’t think that my daughter’s monitor showed that her reflux was very bad—but when the report came back, her eflux was far worse than I had ever suspected. I think she had 97 ep9isodes of reflux and there were quite a few of them that were prolonged episodes—one laste 44 minutes—-and she slept through the entire time that acid was burning her already raw esophagus. She was refluxing almost 25% of the time, overall. She actually refluxed more when she was upright than when she was lying down— she refluxed almost 29 % of the time while she was upright. I can’t remember the % from when she was lying down—but they averaged out to almost 25%, overall. She had a scope with biopsies when they removed the probe and her esophagus was getting ulcerated already, at only 8 months old—and she was on prevacid and had been on carafate for 2 months, also. My daughter had a hiatal hernia and had to have a fundo just beefore she turned 10 months old. Most kids don’t get that bad. However, there was a lady I knew who’s grandson had had to have a fundo. She had her daughter-in-law call me. This gal’s son had alot more episodes of reflux than my daughter, but his overall percentage of reflux was less than sylvia’s—which would mean that he had shorter reflux episodes, even though he had more of them. What was really helpful to me, is that this mom told me that she would do the surgery again in a heartbeat because it had helped her son so much. Sylvia’s surgery was so successful and she didn’t have any problems, that I would tell people the same thing about having the surgery that I was told—I would do it again in a heartbeat. Sylvia can burp, but she cannot throw up. when she gets nauseated, she keeps a bowl by her like my other kids do–but she just spits in it. She wretches sometimes, but there is nothing I can do about it. I try to give her pop and saltines because that always helps my nausea. If she really needed to throw up, we could take her to the hospital and they could put a tube down her throat—but hopefully we will never have to do that. She is almost 9 years old now and doing great.

I know I gave you alot more info than you wanted–i get carried away sometimes!!!!

[Anonymous]

I totally appreciate it! She said he had “mild reflux”, had 94 weakly acid, and 25 acid..He also has laryngomalacia, worsening dyshagia, poor oral motor skills, hx of aspiration pneumonia, THI..his main sx are colicky behavior, fussy, frequent stools with undigested food, bloating, and lots of “sloshing”..now they want to do a DGE test. I was concerned maybe his double dose Nexium has inhibited acid and caused some sort of carbohydrate maldigestive issue. And when I saw over 7.0 most of time, I was surprised. She said the monitor must have been wrong. I keep running into dead ends. Had a screaming 12 month old all day with 2 new hives, and getting nowhere fast. He did have and endo and flex sig which were negative for inflammation, ulcerations..etc..I definitely think I am dealing with weakly acidic or alkaline reflux (which the pulmonologist says can be just as bad if he keeps aspirating)..But why over 7.0? Seems high? Definitely more later!

[Anonymous]

94 weakly acid and 25 acid????That doesn’t tell you a whole lot. Ask for copies of the test results and the graph—they tell you alot more than what your doc is telling you. It would tell you if you are dealing with alkaline reflux—which I have never heard anyone ever mention in 9 years of dealing with reflux.

Give us a little more info on your son—age, weight, medications, etc.

Undigested food in a babies bowel movements is pretty normal for most kids–I wouldn’t worry about that one. A DGE test would probably be a good Idea.

I have really bad reflux and I have alot of problems with dysphasia—I have had to have my esophagus dilated 3 times–and it is time to do it again. I had two episodes, in one day, of my food getting stuck a couple of days ago—it really hurts!!!

If he has no infammation or ulcerations, then it sounds like the medication is doing it’s job. Why is he on a double dose of nexium? Does he still have problems with aspiration pneumonia? What is THI?

[Anonymous]

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<span style="font-size:12.0pt;
line-height:200%;font-family:"Times New Roman","serif"”>Layton was born at 36
wks 5 days at 7lbs 13 oz. He began refluxing at 2months old, and was diagnosed
with hypotonia and developmental delay at 4 months. We tried every formula, and
he finally ended up on Neocate, nectar thick with Simply thick. He started with
chronic hives December 24 (when we initiated solids). He tests positive for orange and apple
allergy, but we are yet to tie the hives to any specific foods besides those. He did not have hives from May 24^th
to July 24^th, when I had him on the FPIES diet which is similar to
the EE diet. He gets severe GI distress,
explosive diarrhea, gassy, bloating, crying with rice, oatmeal, barley, green
beans, peas, sweet potatoes, and thick-it.
As of right now, at 12.5 months, he can only eat pureed foods with tiny
diced pieces, and very small amounts of it.
Otherwise, he starts sloshing and bloating and choking. He tolerates
avocadoes, blackberries, blueberries, nectarines, tapioca pearls pretty well.
We are trying to wean him off the Neocate, because the more fluids in his tummy the worse. We are
trying calorie dense foods. The dr wants me start ½ tsp of olive oil per day,
and surprisingly trial organic plain yogurt.
He has only gained 830 grams in the last 10 weeks, but looks huge
because he has macrocephaly. His head is 50cm, and he is 32.5 inches long. He
is 23#, which I am sure seems huge, but his weight for height keeps
dropping. Hypotonia resolved at 6
months, and besides oral motor he is pretty close to meeting developmental
milestones. He is a little delayed in
social emotional. He doesn’t wave bye bye, peek a boo etc. He has OT and ST (feeding therapy). He has had three MBS and has trouble moving
barium through him. Barium often shows
up on the following tests months later.
He has a right lower quadrant 1cm mass, we are seeing a surgeon for. He
is not too concerned. His main symptoms
now are colicky behavior, fussy, frequent stools, lots of wet burps, crying,
crying, crying. He has transient hypogammaglobulenimia of infancy (THI) (low
IGG’s). He does not make antibodies against some vaccines like HIB. He had 3 months of respiratory issues from
January to April..(constant). His last
bronchoscopy he had high lipids in his lungs, eosinophils, inflammation in his
airways, Haemapholius Influenzae (untypeable)and laryngomalacia. He has had three sinus infections. He only sleeps
for two to three hours at a time. He rarely naps during the day. He has food
aversion to anything crunch or dry. His
respiratory status has dramatically improved the last 2 months. Despite his frequent stools, his tests
usually show a lot of stool retention. We did a thorough clean out for his flex
sig and she still found a lot of stool. In the past he has been on Zantac,
Prevacid, Prilosec, Mylicon, Milk of Mag, and finally Nexium. Our GI doubled his dose to see if it would
help with his arching after feedings, it seemed to. But that was months ago. He was off his Nexium for 5 days prior to his
PH probe, so we are not sure he is that acidic he needs it. His last MBS showed
worsening dysphagia. He is on Pulmicort and Flonase. GI is considering Erythromycin for motility.
But DGE test first. We are going to try
to get a better variety of foods into
his diet. I am beyond frustrated with my baby being so fussy all the time, and
we can’t figure him out. Over the weekend, the GI asked me to do a food and
symptom diary. And I sent her pics of
his bloating per her request. Doc said
she is going to review the PH graph again, and call me Tuesday, I am definitely
going to get the full report. Sorry for being so all over the place..:) Thanks for
any insight.

[Anonymous]

Oh WOW!!! You and your baby have been through WAY too much!!! I am SO sorry! Hugs to you both!!

Some of what you have gone through is similar to what we’ve been through but oh yours is worse. 🙁 Even though it may not seem that what I found to help my children would help yours, many babies have been helped with it they have had many varying symptoms. I am by no means saying it would cure your child but I think it would be at least worth a try. Please take the time to read my blog.

Also I am pasting another mom’s story here. She just forwarded it to me yesterday after she wrote it and sent it to a mom that is considering having to put a feeding tube into her child…….

My heart goes out to you as i read between the lines…so much i know you’v endured! Glad you hav the courage to contact a stranger; and yet i feel i know you somewhat because of our kids food issues. i will try to make a long story short. I totally intend to post my story yet this summer but have been so busy that all i can do is flop into bed, when i know i shoud be typing when the house is quiet. Dont feel at all like a failure…my youngest is 18 mths and still only 20lbs. Mandy was born with a stomach ache! My oldest girl was too, and had same issues, but has seemed to outgrow em better. When my milk never came in on time, i went to formula after catching on she was severely dehydrated;even peeing orange acid crystals. went straight to Alimentum, a special formula for colic and food allergies. if you dont know about it, please look it up. It has been a total lifesaver. Things sorta ok, fussy tho. Then at 3 weeks old got RSV and quit drinking so bad had to be hospitalized for 3 days. so yeah, didnt get many calories so far! And the tears and the panic when you cant make em swallow…but you all about that. Tried different formulas in hosp, and seemed to drink soy. As time went on always fussing,not sleeping good. Went back to Alimentum on my own. Seemed to want to eat table food early. And i wouda never let her if i wouda known it was gona make her sick in the long run. as Martha Koehns articles explain how as infants were not born with certain stomach enzymes. They develop as babies eat. So Mandy started eating and got sick. And sicker. And i was stumped. No fever, just eating slowing down, crying and crying worse. Diarhea. Arching,drooling,raw&bleeding bum,and much more .What we went thru with Doctors too much to explain, i wil write my story soon. But they kept putting her on antibiotics and we was desperate too. Even MRI. Was in hosp twice for dehydration. lost weight. Woudnt take a spoon or syringe, the screaming and fight not worth the calories burned! Meanwhile we watched her helplessly fade. Finally got a Dr we liked that had seen her as an infant convinced to see her. He is GOOD. Sed lets start over. Take her off all the many meds except acid-reflux, which she truly needed, and also start simple with lotsa maalox. When we got to him, he found she had thrush so bad throughout her esophagus and digestiv tract. also painful ulcers in mouth and cheeks. This burned from acid outa control. Treated all this, and she started improving after a week. But i wanted to know why she got anorexia in the first place and correct the underlying problem. Dr also prescribed probiotics since all them rounds of antibiotics had bout destroyed her stomach,killling off all good bacteria. Then i found Marthas article and knew was worth a try. Made total sense to correct her system from the inside out instead of treating problems. And this one big thing i learned and was told by many doctors with my girl that i want you to know. Babies eat only wen tha feel good…their systems govern their intake, its as simple as that. Adults eat anyway or because it tastes good. So tiny Mandy as an infant,fro example, shut down because wen she ate, it hurt. or burned. or however it felt to her. So thats why the screaming at her bottle. Refusing anything for 6 hrs at a time. U still with me am i making sense to you?! So long story short Mandy was way over a year by the time Shan Strattons digestiv blend helped her utilize her food her body so badly needed. It took only a couple days and i noticed less crying. And tears of relief rolled down my face wen she actually opened her little mouth to WANT more! Shes not cured by all means, we still have to negotiate and distract sometimes. But its more that she would rather be playing like she doesnt have time to eat! Also realized she does not enjoy eating like some kids seem too. But the acid reflux symptoms are gone, and the sour poops. It is truly amazing. off all meds execpt i still giv her maalox sometimes wen needs. She stil doesnt seem to tolerate whole milk very well, but doc figures she wil outgrow that since thats common problem. So much more could be said and i left out lotta details even tho this seems lengthy! But i just want your little son to feel good. And you too. Theres help out there and i believe these pills will make a difference for him. Us moms feel so responsible wen our kids arent at optimum health, and that is why my heart cries for you. Because i understand the stress. Im just wondering if his not eating is habit from knowing from tiny on up that food hurts, like Mandy. She acted scared to eat too. Even wen he feels better after being on these pills, it may take a bit of time for his brain to process a differnt mindset that its ok to swallow. Know wat i mean? or he may take right off. Either way, every body coud benifit from more stomach enzymes and probiotics, simplly because of the stuff in our food nowadays! Thats why this blend of digestive pill is more good than harm anyway

I hope that you can soon find some relief for your little one and yourself! I just feel SO badly for you! 🙁

[Anonymous]

I TOTALLY think he is lacking some digestive enzymes, and it created much of these issues. Thank you so much! I am going to look into this for sure. I just started Flor a Stor but they have lactose…go figure.
Thanks again!

[Anonymous]

My little Sylvia was only 22 lbs at 2 years old–so your son’s weight sounds great to me!. The THI sounds like it can resolve as early as 2 years old–i think the article i read said from 2-6 years. It also sounds like it could be the cause of his sinus infections.

One of my sons had a ton of ear infections, cried for the first two years of his life—and now that I know a little more, I am sure that he probably had reflux caused by MSPI—I had to take medication, couldn’t nurse him, and put him on soy formula because my older son had a problem with milk.

My older son is now 29 years old and I think he can still have stomach problems if he eats too much milk. When he was little, he had the allergic shiners, and always complained and said, “the bubble is in my throat.” We took him off of drinking milk, but still let him have cheese and ice cream—and it seemed to make the problem better. He has really bad allergies–he can not even tolerate the allergy shots—so there are a couple of times in the year that he is pretty miserable.

Back to my son that was on soy formula—-I mentioned to the doctor how small he was, so they tested his thyroid (??) they said his thyroid was fine, but that he was anemic and that his iron stores were also low. Looking back, I think he was failure to thrive and it could have possibly stunted his overall growth—he is only 5′ 6″ at 23 years old—i am 5′ 5 1/2″. Only one of my 9 children is taller than me—my oldest son.

My 23 year old did not talk until he was 3, and he had some autistic symptoms. We worked with him doing “programming” type things and he went to a developemental pre-school for two years, then my mother said she would pay for a private preschool if we would keep him out of school for one more year. He did fine once he started kindergarten—he started to struggle in math around 3-4th grade—but he didn’t have problems with anything else. He never had to take any more special classes, either. He always seemed like he had a cold all winter long every year. I suspected allergies. My twins were having some issues, and we suspected celiac disease in one of them—so we tested about 4 of us first. Turned out my son is IgA deficient—he doesn’t have any allergies. Now I know why he had so many ear infections and I figure he probably DOES have a cold most of the winter. He does not have celiac, although IgA deficiency is more common in celiacs than the rest of the population.

3 of my children have celiac disease. We got in on a celiac study and were able to get genetic testing done on all of us at no cost. My husband and I and 8 of my 9 children all carry one of the main celiac genes. My oldest son, with all the allergies, is the only one who can’t get celiac. My stepkids did not get tested. i have no idea why the disease was activated in only 3 of my girls and not in any of the rest of us.

I do periodically have a Ttg test run since I know I could get celiac at any time. We were discussing this today, and my 14 year old asked me why I don’t have all of them tested every year. i had been told to have my 23 year old tested yearly, or if he showed symptoms, when we first knew he carried the gene—-we didn’t know , yet, that the rest of us carried it, also.

Celiac is something you might look into with your son—but he can’t be tested with the Ttg IgA until he is over 3 years old—they don’t make Ttg antibodies before that age, for some reason. He would need a biopsy—but oit sounds like he has already had one—and it didn’t show any celiac—of course, one of my girls’ biopsy didn’t show it, either. It can be patchy.

I wouldn’t be too worried about him not waving bye bye and doing peek-a-boo yet—he’s still pretty young—they all develope at such different rates. He sounds like he is doing ok developmentally, otherwise.

My 23 year old cried for the first two years of his life. i don’t remember how he slept at night or how well he ate other foods—I was having a nervous breakdown when he was born—so i was just barely getting by myself—then my twins were born 1 month after he turned two—–but he had changed dramatically during the 2-3 weeks that I had to be down with pre-term labor. He put on weight and stopped fussing and became a very good little boy—but he still did things that made us suspect autism.

My personal opinion is that he got some sort of brain damage at birth—really bad delivery–and I think he was so young, that his brain found a way around the damage and re-routed.

I had eosinophils show up the last time I had a scope done—enough to look like I could have EE—but I have not followed through with a GI yet, or done any food allergy testing. our ped gi told me that environmental allergies can also cause EE. I have adrenal problems, and I have read that adrenal insufficiency can cause more eosinophils—but I have never confirmed that with my doctor.

I know I just threw a bunch more random info at you—but maybe you can glean something from it.

[Anonymous]

Hi Christine, I haven’t “seen” you much on this site but am glad to get to “know” you a little better! 🙂

WOW, you and your family have certainly been through a lot! 🙁 I’m sorry! I’ll bet you are an awesome mom to all your children. My parents had 11 children so I know how fun a big family is! 🙂 But now that I am a mom I know how much work it must’ve been too. She is an amazing women as I am sure you are too. 🙂

It is odd that only one of us children as a baby struggled with digestive problems and yet today as adults almost everyone struggles with them. Most of them have started taking the digestive health pills and I can not say we are all cured but rather than we have gotten a lot of help from them. Again odd… but many of our children have suffered from reflux but have mostly outgrown it. Now there are 2 sisters that are pregnant and taking the pills so I am anxious to see if they have as good as baby as I did.

Proudmama… Florastor is a unique product. They have a kind of probiotic in them that most supplements don’t. I don’t understand it well but I do know that it only contains one strain of probiotics and no enzymes. Digestive Health (what we use) contains 13 strains plus enzymes. But if you try the Florastor and it works… then that’s what matters. 🙂

[Anonymous]

Thank you all so much. I am so glad to be here. They threw a wrench into the situation. Its been 17 days since his test. I still have not got many results of the test. And, as I stated, the PH results I got did not match what I had seen on the monitor at all. The time stamp was also wrong the entire duration of the testing. I have requested the records to no avail. I kept questioning the difference in what I saw on the monitor, and what the dr reported. The GI called late last night and said she went to view his results on the actual “system” and his records are “missing”. She said there must have been a glitch in the system. She said they had stopped doing PH probes at Phoenix Children’s until recently due to technological issues. She said I could probably seek for my insurance to be reimbursed. I burst into tears. This was a horrible experience and I do not know if anyone has been through anything like this.

[Anonymous]

I wouldn’t worry about what you saw on the monitor and what the doctor reported–that may or may not be significant. I remember that when I looked at the monitor while sylvia was having her probe done, i didn’t see as much reflux as she actually had and what actually showed up on the report and the graph. You just can’t watch that monitor constantly and also watch your baby and keep them happy–plus you are sleeping for part of those 24 hours–so don’t worry about that part of it , too much.

As far as getting a copy of the records, your doctor has them, because she has already looked at them. You need to walk in to her office and ask to se and actually hold your son’s medical record–then tell them you are going to wait right there while they run you off a copy of the report and the graph.

Also, if his records are actually missing, so they have no proof of anything that was done——your insurance should not have to reinburse you—the hospital should not be charging you—they lost the records, not your doctor.

I have been dealing with insurance and medical billing for a long time—and I’ve save us thousands of dollars over the years by checking on EVERYTHING. i also try to get copies of almost everything I have done—It comes in handy.

I am not a litiginous person, but I have learned that I can mention the words lawsuit, or attorney, and people seem to move alot faster—(I doubt I would ever follow through with a threat!) I have also asked if there is a legal department at a facility—and was connected to a woman who was able to figure out in a matter of hours, what some other guy could not figure out over a couple of months.

Some hospitals also have a patient relations department—especially if your doctor is hospital affiliated, they will often take care of problems like this. i have dealt with theses departments twice in the last year. The first time, we were reimbursed $1712.00 and the second time they wrote off whatever was left after my insurance payed. In fact, i just checkd up on something again this last week that had been coded wrong and their mistake was going to cost me somewhere around $160—but when I explained to the office of the owner of the clinic what had happened–they wrote it off rather than recoding and resubmitting it right. (I wouldn’t have had to pay anymore–I had payed my co-pay)

If worse comes to worse, you can do the Ph probe again—but It should be at their cost, since they can’t find the records. Those little ones really are not that bothered by the ph probe. Sylvia acted like there was nothing even there. However, if he didn’t have any inflammation

As far as his symptoms, what do you mean by sloshing, bloating and choking? Do you mean you can hear fluids sloshing around in his tummy, that his tummy is bloated and distended to where it is hard and hurts him, and that he gags alot?

Any child (and any adult) with alot of fluid in their stomach will “slosh”. Most of my little kids had that “bloated tummy” look–it is pretty common for little ones. I’m just trying to figure out if you are seeing something abnormal, or something normal and just don’t realize that it IS normal.

When is his DGE planned?

Tell me a little more about his chronic hives. how often, ohow many, how long do they last, do they bother him alot? sometimes hot water, such as a bath can cause hives–I’ve gotten randome ones in the past when i got out of the shower. After my twins were born, I started itching one night and breaking out in hives. I could scratch a letter or word on my skin with my fingernail–and it would raise up in a red welted letter or word.(can’t remember the name of the condition) If my babies would scratch me with their fingernails while I was nursing, it left little hives. The doc gave me something for it, but it didn’t help, so I quit taking it. It lasted for about 6 weeks—and then went away. No explaination for it, but I had some HUGE–almost silver dollar size hives sometimes during that.

I don’t know if two hives at a time is something to really worry about or not. i also get hives from mice and dust mites.

Yopu said he has had allergy testing, but he is still pretty young for allergy testing to be very accurate. You might keep it in mind to have him tested again when he gets older if things don’t improve—but I certainly hope they do before that much time goes by!!!

keep us posted.

[Anonymous]

Will write in detail later. But we were back at GI Monday and I dont know if I mentioned he stopped gaining weight 8 weeks ago. They found a 1 cm soft tissue mass in his RLQ. Well today he weighs even less. They started Peptemin Jr. His issue I think may be the DGE, because despite being 32 inches and 22 # he can only eat 2 tablespoons of food an 4oz of liquid before he starts crying and fussing. Dr said the sloshing is succusion splash, possibly related to volume issue or emptying issue. We are trying to use calorie dense foods and she has us adding olive oil because he needs more calories in less volume. He saw his pulm yesterday and has another respiratory infection right now. His main issue is colicky crying behavior 60% of the time related to meals. Existed 10 months. Some days are good and some are really bad. Apparently there is a hard copy of the graph which doc had, but the electronic record is gone. I did go into the office yesterday and requested the copies, but they said it was at the main campus, and they faxed a request. I just put a call into the patient relations dept (which GI had recommended too). I will write more later..crying baby..:)

[Anonymous]

Does he have an upper respitory infection, or does he have pneumonia? Since he has a problem with his immune system, it could be the cause of his respitory infections and sinus infections.

The type of immune deficiency my son has, we did not discover until he was a teenager. I don’t think his will go away. The type of immune problem your son has is usually outgrown and sounded like it was somewhat transient. (if i remember right what I read)

Have they done the pulmonary test on your son that tells whether or not he is aspirating? Alot of relux babies aspirate and have no problems, their body seems to reabsorb the fluid without causing them much issue. I think the test can tell whether or not they are getting aspiration pneumonia from reflux.

Some babies reflux and aspirate and end up with a lot of aspiration pneumonia— that is a whole different story.

Fortunately, your son is at such a good weight that hopefully you will be able to figure things out and he will start gaining weight again.

What made you decide to try the FPIES diet? I have a friend who has a son with FPIES. He is about the same age as sylvia. She took him to Philly—there is a doctor there that is really good with that. Your son doesn’t really sound like that is his issue, though. When is the emtying scan being done?

[Anonymous]

what is the cause of your son’s macrocephaly? Also, have they considered testing for cystic fibrosis? kevieb2012-08-09 15:26:02

[Anonymous]

He did have a bronchoscopy which revealed elevated lipids. The pulmonologist said that indicates formula in his lungs. With his swallow studies he has deep penetration of liquids, but has never aspirated during the study. He had interstitial pneumonitis that would not resolve, and his symptoms lingered from feb to may. They said this could be related to aspirating but he also cultured out Haemophilus Influenzae (non-typeable). His immune deficiency is one he should outgrow by 4 years and is transient. As far as I know, his IGG’s could be normal by now. He definitely does not have pneumonia right now, fevers, wheezing, coughing, mucus, ear infection..but upper…he always has a posttussive vomitting issue when he gets mucus. Speech said he gags more on the mucus, because his swallow control is poor. And so the “gag” is doing its job. It sure is scary though! I only tried the FPIES diet because the common triggers were Layton’s triggers. I know he doesnt have that syndrome, but the foods FPIES kids can tolerate, Layton seems too. Instead he has problems with foods like rice, oatmeal, peas, green beans, squash. They did an MRI of his brain and his macrocephaly is benign. Another thing he shall outgrow by around 4. Benign extraaxial fluid of infancy. It causes some issue with balance..etc. But nothing of concern. Dr is considering trial erythromycin..anyone tried that? She said could cause cramps, but would help with motility. No confirmed motility issue, but I think I am willing to trial to get this buy comfy. When he is fussing, his stomach tenses, he bends at waste, it bubbles, he has explosive gas, he has wet burps, its pretty obvious its his tummy. But we have made no progress.

[Author]

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