Posted By Posting
Apr 15, 2011
reflux toddler
Mom to Lucas, a 3.5 year old refluxer with severe gag reflex and sensory issues
New to group (introduction and a few questions)
I am new to this group and look forward to networking with all of you. I have found reflux to be a VERY tough and lonely battle to fight. I have a 3.5 year old son who was diagnosed with reflux when he was about 4 months old. He has always struggled with feeding, sleeping, has a hyperactive gag reflex (which triggers projectile vomiting), oral aversions and a lot of sensory issues (he is tactile and orally defensive). Although he has made VERY VERY slow progress over the years, he continues to battle feeding and vomiting problems on a daily basis. We have done a lot of different therapies. although I am not sure whether any of it has been really helpful. I wonder whether you parents have gone through similar experiences? I frequently question whether one can have a desire for eating when you have associated feeding with pain and discomfort? To date, we have done OT, oral motor therapy, feeding therapy and even hippo therapy. My son has, as I mentioned, a severe gag reflex, so he will often vomit when he cries for just a few seconds, brushes his teeth or when he is chewing and swallowing something. He also vomits when he coughs, and unfortunately that has happened more often then we would like. He seems to always be congested and/or have frequent colds. His pediatritian seems to think he is just catching one virus after the other, but I really believe that he may be getting all of these symptoms as a result of his reflux. Do any of your children also have similar issues? If so, is there anything that you have found to be helpful? I believe we have ruled out allergies, so I am not sure what else could be making him sick ALL the time!!! He has been tested twice for allergies (the skin prick test when he was 15 months old and a blood test just this year) and all came back negative. He has also been tested for E.E, tyroid problems, celiac disease, hiatal hernia, diaphragm issues. All came back clear. To date, we have done the following tests: upper gi (showed severe reflux), endoscopy with biopsy (normal), gastric emptying scan (normal, to my surprise!!!) chest X-rays and abdomen ultrasounds (all normal), blood tests (all normal), stool tests (normal). He is currently on Axid (although I am not sure if it has done much to help him) and Periactin (to stimulateI his appetite). He also takes probiotics and digestive enzymes. He has previously been on Zantac, Prevacid, Erytromycin and even Reglan (when he was about 13 months - for just a week, but we stopped giving it to him after he became very irritable and even more restless). My son's gi has explained to me that the acid suppressant medications will not do anything to help him with his vomiting and now is strongly recommending that we try giving him CISAPRIDE (Propulsid) under the current "study" being performed by Jansen. I am aware of the potential cardiac side effects from this medication, which makes it really hard for us to make our decision. We have talked about this medication in the past but refused to give it to our son, but we are now considering it. My son's gi thinks that this is a safe drug if not mixed with certain drugs and that it can potentially be helpful. I have read some older posts from parents whose children were on this medication prior to it being removed from the US market. I am curious to know if anyone is currently trying this drug under the Jansen study. If so, would you mind letting me know whether it has been helpful to your child? I have also asked my son's GI about bethanechol but his opinion is that it is not as effective as Cisapride and it has a lot of neurological side effects. I also wanted to share with you that my son has (as of the past year) been gaining weight and has moved from below the 1% to above the 25%. So, we are very happy about that. He is orally fed and most of his nutrition still comes from his Neocate Junior formula. Finally, we continue to suspect that he has some sort of delayed gastric emptying (although his gastric emptying study came back normal) as he projectile vomits things he has eaten 4 -5 hours before. Sometimes we don't even think his formula is leaving his stomach. He vomits an average of 9 to 10 ounces (which is a lot for a little guy who will not drink more than about 5 ounces at a time)!!! Sorry if this message is getting too long, I just have so many questions to ask and know that you will be able to share some of your experiences with me. Thanks so much in advance. Warmly Larissa
Apr 17, 2011
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Welcome! I have a son who will be 4 years old next week, who also has reflux and sensory processing disorder. Your story sounds so familiar.... We have had many of the same issues, though my son's reflux became primarily silent reflux after about 2 years.

The sensory component is such a challenge, because as long as they feel overwhelmed by the sensory processing, it is almost impossible to move forward. Did the OT you worked with specialize in Sensory Processing Disorder? What sorts of OT activities seemed to work/not work for him?

I found that, the more I observed and explored my son's situation, the more everything seemed to be related to everything else. It's an incredibly complex web, the human body, and when the neurological system is involved it's even more complicated.

What other therapies have you tried? We have had some success with Chinese Medicine, Cranio-Sacral Therapy, and Somatic Experiencing. I would be happy to talk more with you about any or all of them, as well as just being here as an understanding ear because I know intimately just how frustrating it can be to go for years trying to help your child and just feel like you are never getting where you want to be.

One thing that has really weighed on me recently is the effect that all of our efforts to understand my son's situation have had on him. While I don't feel we ever did anything unnecessary to diagnose him, the fact is that, because of his sensory processing issues, the diagnostic procedures were extremely traumatic for him -- far more than we even realized at the time. After a long road to try to understand some extreme anxiety and aggression issues he has had, we have come to understand that he actually has Post Traumatic Stress Disorder as a result of medical trauma. There is a book I cannot recommend highly enough, called "Trauma Through A Child's Eyes -- Awakening the Ordinary Miracle of Healing" by Peter A. Levine and Maggie Kline. It has a very clear discussion of what trauma is for a child (not an objectively defined event, but a neurological response unique to the individual), as well as some outstanding advice about how to deal with trauma, both from the past and in the present/future. Hopefully that is not an issue with your son, but given his history and the sensory issues, it sounds like it may be playing a part -- and one of the effects of PTSD in children can be significant digestive disruption. This is certainly the case with my son.

Again, welcome, and I hope you can find help and support here -- this place has been a savior for me for nearly 4 years!

Apr 20, 2011
reflux toddler
Mom to Lucas, a 3.5 year old refluxer with severe gag reflex and sensory issues
Dear Lorenzo mama, Thank you so much for your warm welcome and for sharing your son's story with me. While it is sad to read about other people, such as yourself that struggle with reflux issues on a daily basis, it is very comforting to know that I can communicate with someone who really understands our fights. I really appreciate the book recommendation. I have ordered it and look forward to learning something new. I strongly agree with your point that our kid's sensory issues make some of the medical procedures and tests very traumatic. For this reason, I try to be extra careful in terms of procedures I will agree to submiting my son to. I try to think if a particular procedure will change the outcome of his treatment when deciding to do it or not. You asked me about the OT sessions my son has done in the past. We have worked with 2 different OTs and one of them worked for a Center that specializes in SPD so she was very well versed in this condition, but as I said, despite all of our efforts and therapies, we have not seen any benefits from our OT sessions in his feeding and vomiting issues. I can't help but wonder if there is something else that we are missing, as far as a real cause for his reflux symptoms. We are currently doing hippo therapy and oral motor therapy. We have also tried accupuncture (accupressure really) for a couple of months but gave up after we saw no improvement. Our current pediatritian is also well versed in holistic medicine, so we have also tried Bach florals and other homeopathic medicine to see if it would be of any help. Unfortunately, it was not. I have also contemplated about cranial sacral therapy but have not actually tried it. I would love to hear your experience with "alternative" medicine and how it has helped your son. One of the things I have contemplated is whether my son may have had a nerve pinched during labor and whether it could be contributing to his vomiting and feeding issues. I have off course brought this possibility up with my son's GI, but he did not think it was the case with my son. I had a long and stressful labor and my son needed to be delivery with the help of a vacuum extractor. I have also not yet tried a Chiropractor. I am curious as to whether you also deal with recurring ilnesses with your son. My son is always congested but as of the past 3 months he managed to get bronchitis, is now sick with early stages of pneumonia and may also have a sinus infection. I can't seem to think of any other triggers, other than reflux. I think Axid is not doing anything for him right now and his GI doctor is strongly recommending that we try giving him Cisapride. Thanks again for listening and for the great advice you have given me. I look forward to hearing back from you.
Apr 27, 2011
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Larissa -- I didn't even really realize how wonderful it is to talk with someone who really and truly knows this path with the reflux/SPD until I read your post. It can feel so isolating because there seems to be so little information available about the complex interaction between SPD and other health issues.

We have used Cranio Sacral Therapy and Chinese Medicine (combining acupressure, cranio-sacral and herbal treatments) for over 2 years now -- intermittently at first, and intensively now, as we have stepped almost completely away from western medicine for the time being. The three areas where we saw the most improvement in Lorenzo under the care of those two practitioners were 1) stress -- he was always a very physically tense baby, and the cranio-sacral had an almost immediate effect of helping his body soften and relax somewhat; 2) feeding -- he had almost no interest in solid food, and nearly always gagged or choked on them until he was 2, and the Chinese Medicine Practitioner we work with had a miraculous effect on him in that regard. He's still picky and has to eat small bites of most foods or else he gags mightily, but it's no longer something I feel truly worried about; and 3) his immune system -- he was averaging 2 serious URI/LRI's (often with ear infections) per month for over a year when we started Chinese Medicine. Within a few months, not only did he rarely get sick, he would often seem to be coming down with something and then never actually get sick, which was completely unheard of for him before.

I'd love to hear more about hippo therapy. We have a therapy-dog-in-training who is a total miracle in his life in terms of widening his world and giving him the courage to step out beyond what he would every be willing to do on his own.

I'm curious to hear your thoughts on the childhood trauma book. It resonated so clearly with Lorenzo's situation, and we have just located a Somatic Experiencing therapist to work with. It just made sense to me, and since it, like cranio-sacral therapy and hippo therapy is a can't hurt, might help undertaking, I'm very curious to see how things unfold.

As I said in my first post, I find that, as the years pass, I can see more and more how inextricably connected everything in his life/body is. It's a little intimidating in a way, and yet also reassuring, because it suggests that each step forward truly helps elevate him on the path to healing and genuine well-being. I hope that some clarity begins to come your way, as I know how intensely frustrating and depressing it is to live in a state of limbo and uncertainty about your child's well-being. ((HUGS)) Cristina

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