Frustrated!!! and in need of sleep

[nancyrandall]

My 12 month old who has been doing great on the HFI diet came down with an ear infection. The doc gave him Augmenton (sp?). So the ear is getting better but he has lots of dirty diapers, is very fussy, is not eating table food well and wants to nurse all the time. He also wants no one but, mom or dad. He also has stared to get a rash on his chest. All this also causes him to not sleep more then 2 hours at night and 30 min during the day. We are almost done with the meds so I am sure it will all be better soon. But, I am sure he will have another need for meds in the future. My older son has not had to have any meds for years so this has not been an issue.

So my question is what HFI safe antibiotic has worked for others. I figured they could give him a pill form but, the doc looked at me like I was crazy. I give him adult motron and cut it to his size. He eats it fine. He does not take the prescription they have us well. I plan to take this up with his doc at our next visit so I can have a recommendation in his chart.

Do others get a belly rash when they eat something they should not?

The other big issue I have with doc's is that they don't believe he has an issue. He has not had any testing because I just know from symptoms that fructose does not agree with him just like his 6 year old brother. He is 12 months old and 23 pounds so the doc's look at him and thing he is healthy. I also heard a little will not hurt.

I am sure I could ramble more but, diaper duty calls again (3 time today and it is only 8:15 am) Last time he was on meds I called about the diareah and they changed his prescription 3 times. They all are the same (all have fructose). I am just very frustrated.

Nancy

[kristen]

Oh Nancy...I was just wondering about you guys, I was going to post an inquiry...I am SO sorry things are going badly.

First accept my deepest sympathies on your sleep deprivation - I know that's the worst, it's so hard to make the right decisions on these things, but to do it when your mind is on hiatus....eek!

here are my initial thoughts:

Regarding the antibiotic, I don't know which are safe, (knock on wood) we haven't needed them recently and we had a GREAT ENT who took our word for Coley's initial horrid reaction to the antibiotics and put him on the urgent list for tubes...we havent' had an issue since (with his ears anyway). So that's my first suggestion, get into an ENT and push for tubes...

Another thought is that there is an antibiotic shot...it was offered to us once when Coley had a repeat ear infection because the first round of antibiotics wasn't successful... ... we refused because Coley was already in the state that you are describing and at the time we had NO clue what was causing it (the med, or the suspention, the preservative, etc). It was scary but once his body fought that infection on it's own, we havent' seen a fever from an ear infection since! So that's my next 2 suggestions: check into the shot, it may not be 100% safe, but I bet it's much safer than the oral meds, if not...you may want to attempt what we did...but that's something you really need to coordinate with the ped. We had a very strict protocol that we had to follow or we would have to rush him to the ER for the shot...lucky for us the little bugger was strong enough, even in that horrid state, to win against the infection.

Next, yes there are adult antibiotics...push for them if none of the above works!

I would also bring the little bugger up to the ER in this condition to have the whole gammot of testing done...his labs should show that at bare minimum there is somthing amiss (in addition to an infection). Your best bet to get the attention he needs, is to get the Drs to see some concrete evidence. As it was explained to us, the best time to see that is when the body is in stress, either from an illness or from a metabolic crisis...which you may have both at the moment!

And then lastly, as for the rash...Coley's had TONS! They are all weird & unexplainable, and just about all of them we've gotten this: "Wow that's unusual, it's probably just a virus of some sort." I tried looking into that a bit, the best I could do is find that it may be fructose or sorbitol in the sweat...muscles also contain an enzyme, which shouldn't be deficienct with either HFI or FDPase, buuuut, it they are being overwhelmed because the liver is deficient, perhaps this is what we see....That's all a GIANT guess though...

The only other piece of advice I can give you...push the starch...the more little trials we go through, the more convinced I become that starch is our savior (cream of rice, rice puffs, mashed pototoes, crackers, etc. ) and of course loads of water to flush it out....

Hope some of that helps! And hope you are all feeling better soon! Keep us posted.

KJ

[nancyrandall]

Thanks for all the advice. Cole's rash has come and gone since 5 or 6 months. The ped did think it was a virus then at our next visit said it may be food related so I started watching and sure enough when he has had something he should not he gets a rash. It stays for about a week. It does not seem to cause him any discomfort so we don't do anything to treat it.

Marcy - we are sure he has a stomach ache. He sleeps and nurses in a ball and hates if you lay him flat (to change him).

I am going to follow up with his ped. We are also in the works to switch him to the same doc my other son and husband see. He is not a ped but, really has listened and been a big help.

This is only his third ear infection so I am not sure if tubes would be recommended. I know with Zander he had 6 in one year and they said if he had one more they would send us to someone (he did not have any after that). My daugher had 1-2 per year and they said that was normal (she has no food issues that we know of).

Thanks for the support. I needed to vent. Now I need to get back to the kids and see if I can sneek a nap. This has pushed me to schedule an appt for Zander to discuss the blood test.

Nancy

[kristen]

Nancy, the number of infections shouldn't matter...Coley had only 1. The only thing the Dr cared about was that he was unable to tolerate the meds - period.

I forget the Rx he got first, but the next round was supposed to be augmentum, and we had heard about the stomach stuff associated with it...it was just more fuel to refuse it, given the state he was already in.

We see a rash come up on Coley in his diaper area now everytime he has something he's not supposed to...but it's NO WHERE near the extent the other rashes were. But none of the rashes ever bothered him, and when the Drs attempted to treat it, it seemed to worsen.

KJ

[Chelsea]

Sorry to hear your little on is sick.

Augmentin is what we have in our cabinet but not the generic. Regardless of fructose content antibiotics are hard on the stomach, for any child and will most often cause diarrhea. I would suggest offering a probiotic. I would also recommend garlic and mullein drops in the ear. They are soothing and often work better on ear infections than antibiotics (since 90% are viral anyway). More importantly, they are HFI safe. You can usually find them at any healthfood store or maybe even the natural secton of a grocery store.

www.herbaled.org/THM/Compounds/mull_garl.html

[Tammy]

When Regina was small she would get an ear infection about once a year or so. They always put her on "Septra". It contains NO fructose. It wasn't their first choice for an antibiotic, but it works. We were never able to find any type of penicillian. They all used some sort of sugar as the base.

One thing to get your hands on is a PDF. Physicians Desk Reference. It lists ALL the ingredients in EVERY med out there. All Dr offices have one. They put a new one out every year. If you talk to your Dr nicely, maybe he'd even be willing to give/sell you his old one the next time he gets a new one. Mine is several years old and it's still very reliable. Just doesn't have the brand new drugs in it. If you have one of these, you can actually check for yourself. It has saved us a time or two.

Hope this helps.

[lisa]

Nate had LOTS of ear infections during his first year. He got tubes at around 11 months old. They have helped, but we have already had to replace them once. I hear tubes are pretty common in little boys. It is a pretty quick procedure and he enjoyed the glucose water that they gave him afterwards. They are really keen on giving them popcicles and crackers after, so you do have to watch out. It is really hard to keep the earplugs in when he is swimming or in the tub. I've pretty well given up on that, but have to police him going under the water because he will complain that it hurts later.

Since the second batch of tubes were put in, he has only had antibiotics once (not for an ear infection) and they gave him amoxicillin in capsules which I mixed in yogurt. It worked out OK from what I remember, but I think that was early on in the fructose elimination process, so we were still hit and miss having problems getting the diet right for him.

I've noticed since then that there are times I think he might need an antibiotic and they will now ask me to wait it out a bit longer rather than giving him a prescription. So far so good, but I'm a bit anxious about the next time. When we first had visited the GI doc, he said that Nate had probably had more medications/antibiotics in 16 months than most kids had by the time they were 12. Glad that is behind us now!!!

I'm glad you mentioned the Septra, Tammy. I'll keep that in the back of my head for next time.

[Tammy]

When I was thinking about this tonight, I remembered something, so when you put the septra in the back of your mind, add to it that it's only the tablet form that can be used. We used to crush them, etc. The suspension had sorbitol in it. Sorry I forgot about this the first time.

[Benjamins mom]

Hi. We give Ben a zithromax tablet when he needs Rx meds. I think it's actually 3/4 the first day and then 1/2 for 4 days....5 days of meds and he's done! I give it with a probiotic also. He just chews the tablet, same as he does with tyelenol. We too have had 'surprise' ear infections at well visits. We've been thru a slew of kids medicines, from a really sick winter 2 years ago, and this is what finally worked for us so we stick with it every time...for ear infections, to strep throat...to preventing infection in an open fracture! I was very thankful my pediatrician kept searching for something...it's bad enough when your child is sick, but when they are more miserable from the medicines, it's exhausting, and you just feel so bad for them. I've been happy with his tolerance on the zithromax, but will keep Septra in mind for future illnesses also. Hope this helps.
carrie

[kristen]

An interesting antibiotic twist: pediatrics.about.com/cs/commoninfections/a/ear_inf_gdlns.htm


And about the tubes: pediatrics.about.com/od/earinfections/a/06_ear_tubes.htm

I forgot about this...it was Coley's speech (or lack of it actually) combined with his reaction to the antibiotic that allowed our 'urgent' placement of tubes without the many infections.

There was evidence of fluid (without infection) that was being looked into as a possible symptom of a food allergy , but that was our only clue, at the same time that the audiologist was confirming that his brain could hear, but his ears were muffled.

Anyway...just a couple other things to think about....

KJ

[lisa]

Nate did not typically show any symptoms when he had an ear infection other than a runny nose. Amazingly, even when he had pneumonia he still acted fairly normal (Boy, was I upset that I could have missed that!). I think partly, he considers being sick a normal condition, so he just doesn't bother about it.

I always figured that he was ignoring me when I would talk to him and since he was a preemie, I didn't expect him to be talking yet at 11 months. When the tubes were put in, the doc said he pulled out so much syrupy gunk out of his ears that it was likely that he had never heard us in the first place. It was very shortly thereafter that he started jabbering.

[Tammy]

Regina also has had the zithromax. She did fine on it. There isn't anything harmful in it. Her ped gave her that for broncitis one time. Said it would be better for that than the septra was. But he still always gave her the septra for the ears. Maybe it was just his preference, I don't know.

[jenferg]

Nancy- My son was on 12 antibiotics due to ear infections prior to being diagnosed. You must remember that all children's antibiotic and tylenol are suspended in sugar!!! Ask your doctor to give you adult tablets, crush them up and put them in sugar free pudding. You must also know that all of the immunizations that you son is getting are suspended in sugar!! I would suspect that your son may have gotten his 12 month shots around this same time that he has gotten an ear infection. My son got tubes at 10 months old and they have been great for him. Jen F.

[nancyrandall]

Jen,

You are correct he had shots 1 week prior to his ear infection. It always takes a few days to recover from the shots. I just figured that was normal. My non-fructose issued child would run a fever and be fussy after shots just like the other 2. We did skip one that can wait and we did not get a flu shot. I did not know that they had fructose in them. I am glad we turned down the flu shot for my 6 year old (he does not get sick much).

I just had him into his normal doc for a recheck and discussed the meds. She added some stuff in his chart about perscribing a tablet vs the normal and why. This should help the next time we need something and I get some fill in doc. She also recommended that we go to a compounding pharmicy in the area that can mix the meds from scratch for us and could put them in Dextrose or Glucose. His ears were clear and I have been able to get some sleep. He also is happy to play and does not always need me to be holding him. It is a joy to have my tot back.

Thanks for everyones help. I took lots of ideas with me to the recheck and the doc was very helpful.

Nancy